100% of the $15.00 ticket price goes to Rare Disease Research at Rush University via Two Hearts Rock™

Chicago-based Andrew Fraker & Sons kick it off for Trapper Schoepp & The Shades.

Trapper Schoepp & The Shades have opened for Soul Asylum, Roger Clyne, Murder By Death, Social Distortion, Bob Mould, Tommy Stinson and will have just returned from their third tour with The Wallflowers.

Purchase your tickets online:

www.ticketfly.com/purchase/event/256911?wrKey=5D72FBEA8BE01601577A19988FF95631

or contact Lori Butler or Kerry Hughes, Co-Founders of Two Hearts Rock™.
Kerry@2heartsrock.org

Visit this link for more information
www.barrington220.org/Domain/918

The Global Genes Project is one of the leading rare and genetic disease patient advocacy organizations in the world. The non-profit organization is led by Team R.A.R.E. and promotes the needs of the rare and genetic disease community under a unifying symbol of hope – the Blue Denim Genes Ribbon™ hense the “Dollar Denim Days.”

Two Hearts Rock ™ is a Strategic Partner with the Global Genes Project. The mission of Two Hearts Rock™ is to generate funds to advance research for Childhood Rare Disease by using the power of LIVE music to fuel medical breakthroughs. A portion of the funds we raise goes directly to creating unique high energy, music events that educate & elevate this critical cause. Together we have the power to make a difference!

RARE DISEASE STATISTICS
Rare Disease impacts 1 in 10 Americans & 350 million people worldwide, half of whom are children. There are 7,000 documented rare diseases today. It is estimated that 95% of all rare diseases do not have a single FDA approved drug treatment, and there are currently less than 400 treatments approved by the FDA for the nearly 7000 rare diseases which have been identified. According to estimates from the NIH, it will take 10,000 years at the current rate of FDA drug approvals to find therapies for all people suffering from rare and genetic diseases.

So please join us during the week of February 25th-March 1st for Dollar Denim Days. Support rare disease and Wear that you Care!

Unable to attend? Please contribute to this critical cause, and become an Instrument of HOPE:

https://globalgenes.org/two-hearts-rock-donations

One, we have joined forces (since Jan, 2012) with Noah’s Hope and Partnership for Cures in an effort to streamline our foundations’ grants to go toward research specific to Late Infantile Batten disease. When we attended the Batten Disease Support and Research Association (BDSRA.org) conference this summer in Charlotte, we celebrated the fact that some of the research we supported (esp Noah’s Hope) was used in a study by Biomarin, a research phrameceutical company that develops and commercializes innovative biopharmaceuticals for serious diseases and medical conditions. They developed a synthetic enzyme for treatment of LI Batten with regards to slowing or halting the progression of the disease. Their clinical trial is going to begin recruiting soon for the actual trial in 2013. This is so promising for future Batten families!!!!

And two, there has been a press release about a study right here in Chicago at Rush University. They have discovered a way to actually produce the missing enzyme our kids lack with the use of Vitamin A and other lipid lowering FDA approved medications. This is absolutely incredible! Now the research needs to move toward clinic and ultimately trial for children suffereing from LI Batten. Please visit this link to read more about the breakthrough research in our field.http://www.24-7pressrelease.com/press-release/scientists-identify-drugs-for-batten-disease-304304.php

For more information, please visit the web site or email Jenny Welsh at
www.growingcentsofstyle.com
info@growingcentsofstyle.com

Easter Bunnies

Anyone who grew up in the 80’s and is a girl must have seen the movie, Steel Magnolia’s with Julia Roberts. There are several funny and appropriate one liners in the film that evoke a chuckle, even before the dreaded Batten disease. Yet, one line rings true today, “Pink is my signature color.” Well, how much more appropriate is that line for sweet Bridget? It really is her color. She looks wonderful in light pink, her lips are French, rose pink and her logo is fuchsia pink. I’m reminded of the iconic color when I think back to the days when I was sick. Breast cancer’s theme is the pink ribbon. There really is no getting away from it. My new purse is magenta and as Harrison says- “It matches Hope 4 Bridget perfectly, Mom!” Which comes to mind another fabulous quote, “The only thing that separates us from the animals is our ability to accessorize.”
So as we move into spring, “Think Pink,” especially for Bridget.

Bridgey enjoys floating

Big Brother Harrison loves his sister

It’s been a rather wonderful spring with beyond normal temps in March and then a family spring break trip to Florida. We mentally and physically prepared for this trip, anxiously pondering how Bridget would handle the travel. Yet, she did it with flying colors- soaring above it all, landing safely in the warm, salt water pool we had at our house. It was an incredible vacation with the Jensen clan (that’s 14 of us- on my side). We played at the beach, splashed, raced and danced at the pool, as well as ate and drank merrily (daily). Some of us did get a little “pink” during our trip, but only by accident. It was mostly swim shirts and SPF 70 the whole time! Our vacation was a memorable experience for everyone. Bridget and her cousins got to spend quality time together, which is what really matters the most. And, we were together to celebrate my milestone birthday. As my comedic husband said, “No- you turning 40 is different. It’s like 40, with an asterisk.” Pretty sure that was a compliment!

We look forward to the many colors that spring still has in store. From and old article in Quintessential Barrington (April, 2011), Susan McConnell writes,

“There are two things that we know for sure about life. There will always be change. And…there will always be hope.

Change comes in all hues and colors, and in all shapes and sizes. Sometimes it can be anticipated and even controlled, and often it cannot. Sometimes we are startled by its suddenness, and other times it is so gradual that it takes a lifetime to see.

Hope is innate. Whether we realize it or not, we evaluate change and we either comfortably or uncomfortably embrace it and, once we do, almost immediately hope enters the picture. We pull ourselves up by the bootstraps. We reinvent ourselves.

Spring reminds us of both. Hope is all around because the inevitable and inescapable change of the seasons brings new life, longer days and brighter outlooks. Just as winter gives way to spring, disappointment is eclipsed by hope.”

I’m eagerly awaiting my order of flowers that I get from a local fundraiser every year (Barrington Children’s Choir). We receive them Mother’s Day weekend and Harrison helps me plant them in pots to place strategically in front and back of the house. Hot pink, deep pink and rose will encircle our home and we will cherish the color, the change, and the hope it brings.

2. Growing Cents of Style, the children’s consignment spring sale is scheduled for Saturday, March 10 and Sunday, March 11 at 22N102 Pepper Road in Lake Barrington. We are once again looking for donations of gently used children’s clothing to be donated on behalf of Hope 4 Bridget. These items are marked with pink tags and 100% of the sales will go to benefit Hope 4 Bridget. If you are interested in donating please email me at info@growingcentsofstyle.com
www.growingcentsofstyle.com

Making a trip to the pumpkin patch in Indiana

New friends assisting B on their field trip. So sweet!

Bridget remains Harrison’s number one fan as she trekked to flag football and soccer games, which lasted through the first weekend of November. Most days we had beautiful weather with sunshine, but later in the season it got pretty chilly. Thank goodness for the red covered wagon and one of the many blankets Miss B has to keep her snuggly warm. As soon as those sports ended, it was time for our superstar’s birthday. There was something magical about the numbers: 7 on 11. Her birthday was 11-11-11 this year and Bridget turned 7. I really can’t believe that she is this old. She seems younger in so many regards and that is how we think of her most often. We try to help Harrison remember how she was even though it wasn’t so long ago. I don’t ever want him to forget how she RAN down the hall when the donut box came in from the garage, or how she ate the apple down to its core and threw it in the toy box or how she carried this little yellow box around and kept treasures hidden in it- daily. There really is so much to remember, but it gets more and more difficult as time passes. Thank goodness I kept really good track of it while it was happening with albums and videos. I just wish there were more.

Grandpa Bob helping B pet the bunny at her animal birthday party.

Two very important things happened within the past month. We welcomed a new member of our family home- Remy (short for Remington) as he became our new baby /puppy. He is a welcome sight to us all as he promises life and future and fun! We really needed a happy occasion to celebrate in the Kennicott house. Our very loyal and magnificent dog Timber went to heaven. Harrison asked me how do I know he’s in heaven. I said because he’s up there with brother Orvis, Packer, Molly, Lucy and Gracie (other dear dogs who have gone on). Harrison also asked me if he was still sick in heaven and I said- no, everyone is healthy and happy in heaven. You KNOW this made him think about a lot more than just Timber. So losing our dog of 11 years was extremely rough on us all. He was an outstanding companion, friend, protector and therapist. His passing is just the reality of what our family will encounter. We will miss him greatly, especially as we try to potty train Remy in the cold!

Timber Meets Remy

Now we enter the winter season and more importantly, the holidays. Bridget’s health is for the most part- stable. However, she has been having these coughing attacks and gagging issues more frequently. We do everything we can- roll her on her side, do compressions, suction, administer expectorant/cough medicine and just try to calm her down. Our nurse will be coming over tomorrow with oxygen and a pulse ox to monitor her air intake. It’s just the next step toward the other ones we don’t want to take. It feels like someone is making us walk the plank with a gun pressed into our back while sharks are circling underneath us in the water. There’s nowhere to turn. So, we inch along as slowly as possible, hug each other tightly and pray to God that the next step is further away than we think. I’m standing on the plank, closing my eyes tight and trying to feel the sun on my face. All is bright…

We hope you have a very wonderful holiday season with your friends and family while lovingly remember those who have gone to heaven. Because even Harrison knows, Heaven is For Real (an excellent read I highly recommend). And don’t forget to sing a few Christmas carols. They put us all in a better mood. Here’s to many silent nights this winter.

Please consider donating clothes in Bridget’s name to the children’s clothing consignment sale this Fall. All items taggged with the “hot pink tag” will earn money for the Hope 4 Bridget Foundation. The mission of the Hope 4 Bridget Foundation is to provide funding for research and education in efforts to find a cure for LINCL (Late Infantile Neuronal Ceroid Lipofuscinosis), commonly referred to as Batten Disease. In addition, we will provide support to the children and families affected by Batten Disease.

Thanks for coming to do your children’s fall clothing shopping.
For more information, please visit the web site or email Jenny Welsh at
www.growingcentsofstyle.com
info@growingcentsofstyle.com

We have recently contributed funds to two researchers in the field of Late Infantile Batten disease (NCL). The first donation from Hope 4 Bridget was for $16,000 to Pearce Labs for Genetically Inherited Diseases for Children at Sanford Children’s Health in Sioux Falls, SD. Dr. David Pearce is working on a project which develops the methodology for using high-throughput screening assays in INCL and LINCL. High throughput screening uses advance robotics and technology to screen over 100,000 compounds to determine if there are any novel drugs that create new pathways of interest for treatment. It is a drug re-purposing project and one in which could be extremely helpful in finding an existing drug to aid in the treatment of Batten disease. We have had the privilege of meeting Dr. Pearce at last year and this year’s BDSRA conference. We look forward to the progress that he and his associates are making.

Our second contribution from H4B in the amount of $25,000 was given to David Sleat, Associate Professor of Pharmacology, who works with Dr. Peter Lobel from the Center for Advanced Biotechnology and Medicine at Rutgers University. Their study focuses on creating a transgenic mouse that can withstand the human protein TPP1, which children with LINCL are lacking. Currently, the mice used in the experiment cannot withstand repeated dosing of the enzyme . If this experiment can be achieved, they can further their research of LINCL using repeated doses of the enzyme to treat and possibly cure the disease. It would be a significant breakthrough to achieve this.

I seldom refer to the current research and scientists, but think that these two projects are significant. We continue to raise funds and awareness to help achieve such goals. There are others out there that continue to study and create experiments in order to understand the disease. I do the best I can to take in all the medical information. So hopefully, it is clear that we forge ahead in the medical world as we do each day in our own little one.

Luke's Summer Bash for Bridget

Bridget had a wonderful summer. We went on walks in her awesome stroller (aka, “The Covered Wagon”), took trips to the park district pool, sunk our toes in the sand on the beach in Michigan, attended Harrison’s baseball games, slept in (esp little Miss B), and vacationed with our families- cousins and all. It all began with a Summer Bash in honor of Bridget given by our dear friends, the Tepas family. Luke, who turned three, was willing to share his special day with Bridget and used his birthday as a vehicle for charity…the Hope 4 Bridget kind. We are so blessed to have met and befriended the Tepas crew. We are grateful for their generosity and spectacular summer party. We look forward to many more fun times with them and all the other families we met that day!

4th of July

Another summer gathering on the Fourth of July was a bittersweet get together. The VanHoutan family welcomed us into their new home along with the Gahlbecks and Duinstras. We have such a strong connection to one another because of our circumstances. And, we really enjoy one another’s company. On the bitter side of things, it was a send off for the Duinstras. They will continue their fight and fundraising back in their home country, the Netherlands, for Jasper Against Batten. Their family will be in our hearts and we know we will see them again. Later in July, we made the trip with VanHoutans and Gahlbecks to Minneapolis for the annual BDSRA conference. It was a worthwhile trip and comforting being with one another.

Covered Wagons Circling

Kerry Hughes and Lori Butler deserve huge shout out for putting on the extremely successful, Rock for RARE Disease concert at Trace Bar. We had nearly 130 people attend to come listen to Jesse Malin and the St. Mark’s Social. It was a flashback being in Wrigleyville and I have to admit, we felt a little mature. But, it was a rockin’ good time with people of all ages (my parents, too)! We raised lots of money for Hope 4 Bridget. Thank you to all who attended!

We rounded out the summer with our annual trip to Uncle Mike’s with family and more family, only to do it the following weekend as well! The Jensen clan took a summer vacation to Oxford, WI complete with 2 cabins, Grandpa’s fishing rods and a trip to the Dells. It was a very special weekend full of action- eating, drinking, laughing, sleeping, fishing, swimming, and of course, driving. Did I mention laughing?

One Tough Chick

I was in my office the other day looking up at the new fluorescent light covers I got this summer. They’re kind of magical- views of the sky with puffy, white clouds sailing by (some of the new 1st graders think they’re real). The view makes me feel like I’m floating. And that really sums up the past three months. I hope we continue to float as our new school gets underway and Fall comes to our doorstep. As I was finishing up painting Harrison’s bathroom, I looked down at the newspaper underfoot. This is what my horoscope read, “Turn off your mind, relax and float downstream. Steal quiet moments to prepare for the intense energy ahead.” I try to steal these moments everyday with my Bridgey as we snuggle on her table or the sofa each night. I just want to keep afloat with her on our quiet, calm water. God Bless.

Easter

Springtime

(I originally wrote this last weekend!)
After today’s weather, I think we finally smell summer in the air. We went to a baseball game, planted some flowers and grilled dinner. Now that I say it, though, I’ll certainly regret it! We’re supposed to get a blip of cold again this week. But, it’s inevitable….summer WILL come, and not soon enough! Bridget can’t wait for summer….no extra blankets on her when she’s in her wheelchair, going to school or extra coats in the stroller at her brother’s baseball games. She won’t get those little goose bumps up and down her arms or frigid little fingers from the chilly air. We’re just excited for warmer weather!!!

There are 2 weeks left of school and everyone in the Kennicott household is looking forward to the beginning of summer! Both Harrison and Bridget will go to summer school for 4 weeks. H is going to Art class and Bridget will continue her education at the Early Learning Center. Then my Little Miss B will leave that wonderful, amazing, phenomenal group of people (and the state of the art facility) to go to elementary school this fall. It’s with very heavy hearts we leave the ELC and all the people that know Bridget so well. She went to school with them for 3 ½ years- that’s half her lifetime. The staff knew her when she was the running, rambunctious little tornado- sprinting down the hall. Her teacher once told me that’s why she wore running shoes. They tried to help Bridget communicate with signs and assistive technology. She learned how to use pictures on Velcro to tell them about her day. They’ve been with Bridget as she lost her coordination, fell and bumped her head, only to do it again the next day and the next. Bridget wore the most adorable cushioned, pink helmet you’ve ever seen to protect her little noggin. Then they were with us after the diagnosis with disbelief and grief. They had to realign IEP goals to meet her needs as they so quickly changed. They made home visits when Bridget stayed away from school for a month to recover from surgery and get stronger through her g-tube feedings. They’ve watched her increase in size and diminish in ability. They came to fundraisers and supported our Hope 4 Bridget cause. They’ve been with us every small, stumbling step of the way. There is no amount of gratitude I could bestow upon them to adequately thank each and every teacher, aide, nurse, or administrator. They’ve done so much for our sweet girl. They love Bridget and she loves them. I just can’t believe we have to leave this family. Her IEP meeting this week was overwhelming to say the least. There were many others in the room and some in tears before me. I know we will love our new staff and they, too, will love our Bridgey. It’s difficult facing change when we really don’t want anything to change at all for Bridget.

As for Bridget’s physical status, she has little that’s changed (thank goodness). Her growth spurt seems to have slowed down. She has an occasional cough and very little congestion. She does have an increase in myoclonic jerks (very rapid, small seizures that just make her jump). We are handling all of it as each new day comes.

So now, we wait for summer and all the wonders it will bring. We will have trips to the beach and the ball park. We will get dressed in capris with no jackets or sweaters. We will spend time together as a family and have special projects to accomplish. Most of all, we will inhale all the smells of summer and hope that you do, too.

A Fifth Season- Brightening the Landscape of Batten Disease.
Please join us for a benefit to fund research on behalf of the five Chicago children who are bravely fighting Batten disease.
A casual gala for a serious cause, the event will be held on Saturday, April 2, 2011, at 5:00pm at the
Cotillion Banquets 360 Creekside Drive in Palatine, Illinois.

The five children are fighting Late Infantile Batten disease, an extremely rare, degenerative genetic disease. For the first few years, the kids developed normally, toddling, talking, and laughing like any other kids. Jasper (6) loved to explore… Bridget (6) always wanted to go-go-go… Ethan (6) received his diagnosis last July… Noah (6) loved playing with trains…and his sister Laine (5) adored playing dress up.

Unfortunately, everything changed quickly. Between the ages of 2 and 6, the children began to lose muscle coordination and experience seizures. Within a few years, they began losing their ability to speak, walk, and feed themselves as their little bodies slowly shut down. Eventually, children with Batten disease become blind, bedridden, and unable to communicate. At this time, Batten disease is terminal between the ages of 8 and 12.

If only there were more hours in the day, or a fifth season in the year, we would have more time to find a cure. And we would have more time for each of these special children to experience a childhood before Batten disease ruthlessly rips it away. It is time to find a cure. It is our turn to help.

The Fifth Season fundraiser gala will provide a big benefit experience with a relaxed atmosphere, featuring fantastic live music, special appearances, an impressive silent auction, and an extensive appetizer, dessert, and open bar.

Dress for the event is casual. The cause is absolutely critical. Please bring your friends, tell your neighbors, and spread the word about the Fifth Season event on Saturday, April 2, 2011. Together we can help find a cure.

Click this link to get to the invite page!
afifthseason.eventbrite.com

Bridget's School Team

So here is the latest and greatest on our dear, sweet, Bridget. There is nothing significantly different about her, gratefully. It’s some little things that add up, however. It’s the constant touch and go, ins and outs, ups and downs, however little, that make us hold our breath from day to day. Yet, we’re here and taking it just that way- day to day.

Bridget had a bad cold right around the time of the blizzard (Feb. 2). So, the two days off was a relief for her. She only ended up going to school for two days during a two week period. I was fine with keeping her home if she didn’t feel well. Then when we tried to send her and it didn’t work at all. Every time she sat up in her wheelchair or got on the bus, she would have terrible coughing attacks where she couldn’t catch her breath. All of this resulted in her gagging and throwing up (and lots of laundry). The end result was getting kicked off the bus! We understood this decision as it was putting her safety and other’s at risk. When the principal calls you at home on a Friday night, you know something’s wrong. On a side note: we adore Bridget’s school team and value any decision they make.

Happily, the cold subsided, we got a doctor’s note to ride the bus again AND Bridget got a major overhaul on her wheelchair. I believe the term is “pimped her ride.” The issue is Bridget’s rate of growth. She is inexplicably growing so quickly, we had to get a whole new seating system in her chair. She also needs a bit bigger clothes (like sz. 8!). Obviously, the disease destroys neurons, so it’s possible everything is out of whack because of this. Per our neurologist’s office, we tested all her hormone levels, which came back normal. This is mystifying, to say the least. It is a workout to lift that 60 pound girl up the stairs! Thank goodness I’m working out!

With February passing, there is a feeling of melancholy. I think about how three years ago, I thought things were terrible- I was diagnosed with cancer- starting my 6 month regiment of chemo and Bridget had 2 small seizures by then. Yet, she was running around, shouting, eating, dancing, and watching tv. I can’t even wrap my head around that. I wish I could go back in time and have that little tornado back in my life. She was three at the time and now she’s six! We block our future with a brick wall, refusing to imagine how much time there is. The simple truth is: there just isn’t enough time.

In the meantime, we forge ahead. We’re very happy to announce our latest fundraiser, open to the public “A Fifth Season….Brightening the Landscape of Batten Disease.” Please join us for a benefit to fund research on behalf of the five Chicago children who are bravely fighting Batten disease. It will be held on April 2, 2011 in Palatine, Il at the Cotillion. See our Fundraising page for more information!

Thank you for always uplifing us with your support. We couldn’t accomplish these things without you! Love and prayers.

Please consider donating clothes in Bridget’s name to the children’s clothing consignment sale this Spring. All items taggged with the “hot pink tag” will earn money for the Hope 4 Bridget Foundation. The mission of the Hope 4 Bridget Foundation is to provide funding for research and education in efforts to find a cure for LINCL (Late Infantile Neuronal Ceroid Lipofuscinosis), commonly referred to as Batten Disease. In addition, we will provide support to the children and families affected by Batten Disease.

Thanks for coming to do your children’s fall clothing shopping. For more information, please visit the web site or email Jenny Welsh at
www.growingcentsofstyle.com
info@growingcentsofstyle.com

I'm doing the best I can! Look at me!

I think my PT is really funny!

Although it turned 2011 exactly 10 days ago, I haven’t had the opportunity to sit down and just reflect, write or update the website about Bridget. So, here is my best attempt!

There have been three major events for our family within the past couple months. First and foremost, our beautiful Bridget turned 6 on November 11th! It’s a celebration filled with many emotions. We are delighted and happy and grateful that our family came together to celebrate life- Bridget’s life. She deserves SO many celebrations. In fact, our dear friend, Kerry Hughes decided to throw Bridget a grand event at the Kohl Children’s Museum. With over 100 attendees, The Children’s Rare Disease Network, the BDSRA and Lybba, we sent a message to pay attention to these children, to Bridget. I realize the people who attended the party mostly knew this, but we had great coverage by the Daily Herald, as well. It was a party that I will never forget. Thank you to all the people who made it happen! And so, Bridgey is 6…an unbelievable number. We sit in a vacuum of time and try not to wonder what is in store for us. We sit in this holding pattern and cuddle with our girl, catching smiles when we can, giving her therapies, nourishment and watching her grow like crazy. I try not to think about the other little Kindergartners who she would be having play dates with or how she would be learning letters and sounds (it’s the teacher in me). I feel like I will always think of Bridget as that precocious little girl, almost 4 years old, who would run so fast and climb and slide and laugh and dance. She could eat an apple all the way to the core, toss it to the side and go in the fridge for another in about 5 minutes flat. For these reasons, her birthday makes me incredibly emotional. Looking at time is a funny thing. “We can’t go over it. We can’t go under it. Oh, no! We’ve got to go through it!” (excerpt from We’re Going on a Bear Hunt)

Family and Friends Celebrate Bridget

Another major event was the Conference hosted by the National Institute of Health and the Batten Family Coalition (8 nonprofit family formed foundations including Hope 4 Bridget). On November 11-12 (ironic timing) about 50 people from around the world, representing the best from science, the industry, and the NIH came together in Bethesda, Maryland to discuss new approaches toward developing translational research for Infantile NCL and Late Infantile NCL (what Bridget has). The conference was a great success because it was the first time this group came together in an open discussion. We now look toward the future of research and trials in hopes that we can support these scientists and doctors. By coming together, they have opened the doors to one another and in finding a cure for our children. We will forge ahead in our efforts, too, with future fundraisers that could support their efforts. We will not give up on fundraising for Hope 4 Bridget!!!

Third, I clump the holidays into the last of our major events. When December began, we knew it wasn’t going to be an easy go. It is by far the truest statement, that the holidays can be very difficult for some people. You mull over the ‘what ifs?’ and current status and it all just kind of gets to you. Dave and I were on the exact same page. There’s a line now that I will love forever. If you watch Christmas Vacation, you know the part when the wife is telling everyone to go home before anything gets worse. Well, Clark just looks at her and says, “Get any worse, get any worse!! Take a look around Ellen, we’re standing on the thresh hold of HELL!” In a twisted way, this made me absolutely hysterical with laughter and tears. Harrison had never seen me laugh so hard that I cried. He was mesmerized! Silly moments catch you off guard and make you laugh ’til your stomach hurts. And we laughed a lot over the holidays. The two weeks off with my family was true bliss. It was a “wonderful life” filled with laughter, a couple tears, but mostly the people we love.

Coming Together for Christmas

Mom and Dad seeing me off to my first day of school.

Last year, Bridget was Cinderella for Halloween. I remember her looking at that fluffy blue dress and you could tell what she was thinking,” What the heck is this thing?!” I guess one year wasn’t enough, justifiably, for being a girl from a fairy tale. So, Bridget will be another kind of Princess; Snow White. I found this costume some time ago and it just seems fitting for her being, “the fairest of them all.” Please look forward to some wonderful pictures of this upcoming holiday!

Pumpkin time is here! Thanks Harrison for always holding on tight.

All items taggged with the “hot pink tag” will earn money for the Hope 4 Bridget Foundation. The mission of the Hope 4 Bridget Foundation is to provide funding for research and education in efforts to find a cure for LINCL (Late Infantile Neuronal Ceroid Lipofuscinosis), commonly referred to as Batten Disease. In addition, we will provide support to the children and families affected by Batten Disease.

Thanks for coming to do your children’s fall clothing shopping. For more information, please visit the web site or email Jenny Welsh at
www.growingcentsofstyle.com
info@growingcentsofstyle.com

JUNE
Kicking off the summer included a get together with the VanHoutans and Duinstras at our now handicap accessible house (our front walk was made into a brick paver ramp). All the kids had a great time and we truly enjoyed one another’s company. We have some very wonderful friends through the tragedy of circumstance.

Special Dads with Wonderful Kids

We had an endearing celebration on Father’s Day as Grandma Katie invited us to Assumption Catholic Church downtown for the blessing of Bridget’s Garden. Katie and her Garden Club revived the courtyard, creating a special place in honor of Bridget- including a butterfly bush. It was an amazing tribute to our very special girl and a perfect way to celebrate family that day.

Bridget's Garden

Then Harrison and I jetted off to Florida for a few days with our dear friends, Anne and Charlie. The boys got to play golf, tennis and swim to their hearts’ content. Anne and I got to sun, read and relax with wine. I really missed that when I got home!

JULY
Harrison set out for his next vacation with his cousins to Vermont for 9 days. Whew- that’s a long time without my little man. I really missed him after Florida, but he loved every minute of it. Sadly, we lost our tried and true dog of 16 years (yes, you read it correctly) while he was away. Orvis will always hold a special place in our hearts. So, Dave and I decided to take our one dog and one child to the beach for the weekend. It was fabulous. Bridget got her toes in Lake Michigan as well as the sand. There’s nothing like a sea breeze in summer during a quiet weekend away.

Girls at the Beach

Then the four of us headed off to Louisville, KY to visit our friends the Masters. It was HOT down south, but Bridget enjoyed the refreshing pool water, as we all did. As we visited the Louisville Slugger Museum and Factory, Harrison received his first birthday gift – his own autographed bat. We had a wonderful stay with friends and continued our adventure in Zionsville, IN with a visit at the Swacks with the Greenes and Twitchells. Let’s hear it for DG sisterhood- wow!

As the month ended, we embarked upon our first BDSRA (Batten Disease Support and Research Association) Conference in Oak Brook. Although we feel close to our friends in Downer’s Grove and Chicago, it was so good to get connected to the other families we’ve only met via cyber means. We also had the opportunity to listen and meet some more of the researchers that are working on gene or enzyme replacement therapies, including a representative from BioMarin, a company that did the phase 1 stem cell therapy trial through the Children’s Hospital in Oregon. The smaller group that is known as the Batten Family Coalition (the 6-7 families forging ahead that have children with Late Infantile, same as Bridget) met and have solidified a meeting of the minds to include many different researchers of Batten disease. They are coming together to meet in November, partly sponsored by the NIH and partly sponsored by the Foundations that we have all created. It will be a very exciting time as researchers for Late Infantile have not done this before. They are meeting on November 11 (an easy date to remember) and we look forward to what transpires. Wouldn’t it be wonderful to have them coordinate their research so that a cure truly materializes???

AUGUST
Off to the Lake again, but with many other takers! The annual Kennicott family reunion the first weekend in August is always a hit. This year, the weather was perfect, food delicious and sleep, well, we returned home tired for sure. So great to see all the cousins and celebrate a new baby as well as 2 engagements. It never stops growing!

Kennicott Cousins, 8 & Under

At home we are preparing for school to begin and an 8 year old’s birthday celebration. Harrison had a swim party at Dolphin Cove (our local park district) on Saturday and a family cookout at Aunt Jan’s on Sunday, August 15, 2010. I think with any milestone, like a birthday for instance, a sense of nostalgia takes over. I’m a little weepy today and Dave certainly can’t tell why. I guess I can’t really put my finger on it either….my son is eight, school is about to start (a perk: Harrison is coming to NBS with me), summer is coming to an end, Bridget lies in her stroller-growing longer, she goes back to her old school for a month because the new one isn’t quite ready, 2 years ago today I had my last chemo….and the list could continue. However, I cry when I’m happy, too, and all of the things listed are reasons for happiness. We have many blessings, I know. Sometimes, I just wish they were a little different, like any normal family would.

Bridget continues her stability in health- growing and eating well, having very little seizure activity, and maintaining the ability to get out and about (with 100% supervision and help). We aren’t without some hiccups from time to time. But, the best part of the day is when she sneaks you a smile. We treasure each sweet one. I know she will be ready to share those with her teachers when she goes back to school on Aug. 30. Bridget is their rock star. Here’s to a happy, successful start to the school year!

Hope 4 Bridget

We are gearing up for summer as we attend “Noah’s Fun in the Sun” today- our friends, the VanHoutans, have a large scale, family fundraiser for their foundation and children (www.noahshope.com). We look forward to celebrating the beginning of summer, family and friends with them.

With Dave working from home and only a few things planned, we will bask in the luxury of being together as a family in the next few months. We plan on small trips to visit out of town friends and the beach at Uncle Mike’s, something B and I have missed the last couple of summers. We will take full advantage of it now. We are living in the present as each day is truly a NEW day and we’re going to live it to the fullest!

We’ve seen a little of Bridgey’s personality shine through as of late. In the early morning when you go to get her from bed, she looks at you with wide eyes and a little smile. It really is something to keep you going through the whole day. Check out her sweet smile after the massage therapist visited! I smile everytime I see this!

Some Bunny Loves Me!

It’s been awhile since I ‘ve caught up the news about Bridget. Her day to day condition remains somewhat stable and we are blessed to share that. She has had a little cough, but we’re trying some allergy medicine seeing as spring has sprung. Bridget continues to go to school and get all the therapy and attention she deserves. Her teacher, Nancy, shared some very sweet stories this week about Bridget’s classmates. It seems Alexia and Hailey clamor to be with Bridget whether its helping her push buttons on a book or wheel her down the hall. That made my heart sing- Bridget and her buddies! We’ve had services from hospice including music therapy, massage therapy and nurse visits. It’s nice to know they are always there- we can call them 24/7.

On the medical front, Cornell has opened their screening process for the 2nd phase of Gene Therapy. This is an exciting time for the Batten community and the children. The actual trial is seeking 16 children to treat, but sadly the inclusion criteria is far more difficult for someone like Bridget. We were actually called to come out for the screening process. With time to think about it, we weighed our options and found out that on a scale of 12 points, Bridget would maybe score 2-3 (they look at mobility, eating, communication and vision). She would NOT be asked to be part of the trial based on these numbers, she is simply too far advanced in the disease. To know this is one thing, but to hear it is yet another. That day was extremely difficult for me as her mom.

Another medical piece of information is very promising- a 2nd phase trial from the company Stem Cells, Inc. was applied through the FDA. This treatment uses purified neural stem cells to provide the missing enzyme that children with NCL lack. Please read this link to learn more www.globenewswire.com/newsroom/news.html?d=189322

Dave went to the Lysosomal Storage Disorder Conference in February where he learned about what scientists are researching and what other families with foundations similar to ours are doing (raising awareness and funds for research in LINCL). In fact, some of theses families have come together with the BDSRA and formed a “Batten Family Coalition” where we are all working together for the same goal. It is very exciting to have others come together with the same intent, not only to help their child, but help others with the disease as well. We look forward to the coalition taking shape and providing help for a cure for Batten disease.

Thank you for keeping up with our story, our family. God Bless you and yours.

1. Rock 4 Bridget: A benefit concert at the Elbo Room in Chicago. This was organized through family, Kathleen’s brother, Chris Garibaldi, featuring musical guests: Bully Pulpit, The Weightmen, The Suneaters, and Branden Barnett of Ghost Shirt!!

2. A Cocktail Reception at the Onion Pub in Barrington. Friends and family of the Jensens and Kennicotts came together to visit with one another, including Bridget! There were silent auction items, live music from Way Past Curfew and cocktails and food.

And a third on the way…If you are a GOLFER- this is for you! Another foundation has taken up our cause and would like to donate some of their proceeds to H4B. You, too, can participate in this fundraiser at their Golf Outing Charity on July 30 at Golf Club of Illinois in Algonquin. Please see their website for details www.jimmurphy.com

Again, we would like to thank everyone for their generosity. It never, never fails to astonish us!!!

In addition to the media coverage, we have a couple articles in this month’s Quintessential Barrington. Here is the link to the one they asked me to write. Sometimes, it’s so easy to tell her story.
www.qbarrington.com/quintessential.html

1. Joyce Schwegel, neighbor of Katie Kennicott who put us in touch with Rick Kogan on WGN Radio, The Sunday Papers. Air date 2/14/10 link: COMING SOON!

2. Jennie Lim, who taught with Sara is a friend with Ellee Pai Hong who helped us get a spot on the NBC morning show with Ginger Zee on 2/21/10 link: TRYING TO LOCATE!

3. Tracy O’Brien, an old high school friend of Sara’s who is an executive producer at CBS offering to have an interview by Jim Williams with our family airing on Monday, 2/22/10 link: cbs2chicago.com/local/batten.disease.bridget.2.1512046.html

More to come….
Chicago Tribune will have an article about our past 2 years as a family dealing with cancer and Batten Disease. We will also be featured in the local journal Quintessential Barrington in their March/April edition.

Thank you for all the attention on Bridget’s behalf. If she only knew she was this famous!

At the Read-a-thon

You can now order your Hope 4 Bridget t-shirt! Simply email my friend, Kate at freundly5@comcast.net. Give Kate your size (kid or adult) and color preference (Pink is $15 and White is $12). They come in short sleeves.

Spring/Summer Sale March 6th and 7th
21805 Field Parkway Suite 120
Deer Park Town Center
(located in the Hamilton Partner office buildings, southwest of movie theater)

Two Ways to help Hope 4 Bridget:

1. Purchase pre-sale tickets for $25 to shop before the doors open to the public.

2. Donate clothes in Bridget’s name (she is a “consignor”) for the Pink Tag Sale.

Please visit the web site or email Jenny Welsh at
www.growingcentsofstyle.com
info@growingcentsofstyle.com

A giant thank you to the fundraiser’s organizers – Stephanie Hagan, Gretchen Kozlowski, and Barbara Aievoli, who came to know the Kennicott family through North Barrington Elementary School. And, to all of the volunteers and sponsors that made this event possible! You give us HOPE!! A huge hug of thanks to each and everyone who donated time, money and possibly a baked good, which raised $1,000 on its own! Thank you Deb, Deb and Noreen!

You can check out some local PR on this link http://www.triblocal.com/Barrington/Detail_View/view.html?type=photos&action=detail&sub_id=135372

Tickets on sale Jan. 11 for $25- Kids under 2 FREE!
Call the Raue Center at 815-356-9212 or log onto

www.RaueCenter.org
www.Ralphsworld.com

Invitations are out! Registration fee is $10 and includes lunch.
Make checks payable to Hope4Bridget/BADC which can be returned to your child’s teacher/Barrington School OR mail to P.O. Box 345, Lake Zurich, IL 60047.

WHEN: Monday, January 18, 10AM- 2PM
WHERE: Lake Barrington Field House, Barrington, IL
WHO: Kindergarten – Fifth Grade Barrington Community Schools
WHY: To support and raise money for the Hope 4 Bridget Foundation and celebrate children coming together for the common good of another child and her family.

HERE ARE THE PLEDGE SHEETS!
Please choose one to download- it is up to you! Collect the funds and send them to the P.O. Box listed above.

THANK YOU for your particpation!

Pledge Sheet Foundation
Pledge Sheet Trust

On Tuesday the Strodes left and we took a trip to Hollywood Studios where Harrison became a Jedi in training, we met Buzz and Woody and saw an amazing light show. Wednesday was a trip into the jungle at Animal Kingdom complete with a bug show, safari, Nemo and Lion King shows and an awesome parade. Harrison and Madeline transformed into a tiger and fairy with their beautiful face paintings. Thursday was just the four of us and a chilly day at Universal and Islands of Adventure. This is where Bridget had her birthday present (a day late) with a meet and greet with Dora! Dora was wonderful playing on the ground and holding Bridgey then walking us down the main street. We were celebreties that day! Friday finished off with Sea World and a beautiful sunny day. It was lovely at the whale show, Polar Express exhibit, sharks, dolphins and petting the stingrays. On Saturady we packed up visited some friends of Dave’s and headed home. We had heavy hearts leaving, but were also looking forward to getting back to the comfort of our own beds (esp BRK).

Today, we prepare for at least a 3 day stay at Rush hospital. Knowing this day would come is no surprise to us. Bridget has been losing the ability to eat (as you’ve read in previous posts). Every meal was extremely stressful especially with the fact that she wasn’t getting her medications. Last week when we visited the neurologist he got us admitted to the ER for dehydration and came to find out that Bridget lost 7 pounds! They gave her a feeding tube placed through the nose and sent us home for the weekend. Tomorrow, Monday Nov. 23, she will have the G-tube placed directly through her belly for feeding. This is a HUGE relief. She is getting nourishment now and all her medication. Children can go many years with this situation and can thrive on it. So, no need for alarm. We feel like a weight has been lifted. When I first knew about this coming our way- several months ago, I was afraid and sad. But, now that it’s here, we are at peace knowing that it will only help her.

So we may not make it to Thanksgiving dinner, but we’re thankful Bridget will be getting her dinner! Say a little prayer tonight that all goes well! Thanks to everyone!!!!

10% of your TOTAL purchases during this event will be donated to Hope 4 Bridget.
Plus receive a $15.00 Money card for every $150.00 you spend. When your shopping is complete, simply present the invitation and customer receipts at Customer Service.

Bridget loves to stand up on the couch these days and cry out to us as if to say, “Come on, I’m hungry!!!” or “This diaper is way overdue. Change me!” We are happy that she’s trying to communicate with us, albeit quite basic. She is having a harder time balancing and lifting her head, as well as eating. She’s definetly having more difficulty with her vision as I’ll go in toward her for a kiss and she’ll try to eat my nose. Sometimes, she just lies on the floor to watch tv. I’m just so forlorn at how fast this is all happening. I knew we would have to face these things, but at the rate the last few months have gone, it’s just too fast.

We are anticipating Halloween as Bridget will be transformed into the princess she deserves to be- Cinderella. I can’t wait to put on that blue sparkly dress and live in fairytale land for a few hours with her.

AND, we are looking forward to our trip granted by Make A Wish to the fairytale kingdom of them all- Disneyworld. We leave November 8th for a 7 day, 6 night whirlwind trip of Mickey Mouse, Dora, rides, whales and, of course, princesses! The most magical part of the trip (other than a few cousins joining us) is that Bridget will celebrate her 5th birthday on November 11 in the Magical Kingdom. We hear she will get even more special attention that day.

Sorry it’s been awhile since I’ve journaled. Life gets in the way when you’re trying to get things done.
Thank you to all the people who follow, read, ask and support me/us. The fundraising is so wonderful! A special thanks to Katy Michels, Chely Sepsey, Julie Strode, Kathleen Jensen, Jenny Shannon, Kerry Hughes, Judy Benkendorf, Nicole Robbins, and Valerie Swack. There will be more….

Love and prayers to you and your family. And as Harrison says each night, “God Bless everyone we know and love, especially Mom, Dad, Bridget and Harrison. And Bridget this much more because she’s the specialist in our family.” AMEN brother!

Email Chely at cseps5@yahoo.com or register online:
http://www.mycmsite.com/sites/chelysepsey/event-detail?calendarEventId=1444546

Date/Time
Saturday, October 24, 2009
9:00 AM

Location
Old St. Mary’s Church
10911 Woodstock Ave.
Huntley, IL 60142

Tastefully Simple- featuring new recipes and supplies for dips, breads and desserts
Gold Canyon Candles-offering fantastically scented candles
Daisy Bags-custom made handbags made with original fabrics and ribbons
Usborne Books- award winning children’s books with over 2,000 titles to choose from.

All vendors will support the Hope 4 Bridget Foundation by donating a percentage of their sales to raise funds for research and a cure for Batten Disease.

The Open House is on Friday, October 16 from 7:00 pm to 9:00 pm at Katy’s home; 175 Meadowbrook Ln., Lake Zurich, IL.
Thank you to Katy, the vendors and all who attend!

Please join us for a night of food, drinks, and fun featuring University of Illinois favorite band, Simmering. The funds raised from this event will be donated to the Hope 4 Bridget Foundation which raises awareness and education for the treatment and cure of Batten Disease.

Date: Wednesday, September 23, 2009

Time: 6 – 9 p.m.

Location: Rockit Bar & Grill, 22 West Hubbard, Chicago, Illinois

Price: $35 – 100% of admission will be donated to the Hope 4 Bridget Foundation. Complimentary cocktail reception and appetizers provided by Rockit Bar & Grill from 6:30 – 7:30 p.m.

The Hope 4 Bridget fundraiser is open to the public, so please spread the word!

We have certainly been traveling this road for what seems like years, although it’s only been 18 months. Remember how you referenced your new child’s age by months? Wasn’t Bridget just 18 months old running away from me, laughing and climbing the ladder for the slide? Wasn’t it just yesterday she used to open up the refrigerator, take out an apple and eat it to the core, only to get another one 2 hours later? Didn’t she just give me that hug that hurt because she squeezed me so hard, but felt good at the same time? It hardly seems possible that time goes by quickly day to day, but altogether slowly as we watch our Bridget change. Many people ask me when I am going to update the website. Sometimes they just drop hints that say they’ve been looking; wanting to ask how Bridget is doing. Well, we live with her everyday and love her every minute. That’s what counts most right now.

Bridget’s current condition is simply OK. She has braces now for her ankles and feet. She stands sturdy in them, but sometimes can be blown over from the wind of a wagging tail. Then she’s just mad about falling and not being able to get up. Bridget walks with assistance almost all the time now. She can use the furniture for support and there’s always us. She is happiest in the car seat or stroller, but it has to be moving! Bridget continues to have a good appetite, but can no longer feed herself successfully. She is losing muscle coordination in her fingers and hands and is often very shaky. So, our dogs reap the benefits at meal times, if we’re not supervising. Bridget’s vision was tested with a truly horrific test at Children’s Memorial a couple weeks ago and yes, the disease is affecting her retinas. She is losing clarity, although we cannot judge how much and most likely her peripheral vision. Soon, Bridget will be back at school (Aug. 31) with a lovely new teacher who came for a visit to our home today. She plays the guitar which will light up Bridget’s world, as music is still her sweet spot. B will also have her own aid to assist with movement, playing and overall care at school. We’re so grateful we have people like this in Bridget’s life.

Forging ahead on this incredulous road, Harrison and I began school today. It’s refreshing to see all those wonderful, little, smiling faces. I remember today why I like my job so much. There’s so much potential and wonderment. How can that not inspire me? Harrison, too, like the first graders in my hallway, is enthusiastic about school and learning. He can read well, but much rather prefers me reading to him. Didn’t we all like someone reading to us, taking us to another place, somewhere far from here? I just wish I could whisk my little girl away to New York or Portland or anywhere that has a cure for this disease. Harrison asked me in utmost honesty what would I do if the doctors found a cure for Batten Disease? I told him I would yell “Halleluiah!!” Then he proceeded to ask me, “Why did God give Bridgey Batten Disease?” I sat quietly thinking about something sensible without swearing about it. I told him, “Because he knew she would be strong and fight it. And that we would always be here to love her and help her no matter what.” He understands so much in his full 7 years.

Time ticks by….. we’re still waiting to hear from the doctors at Cornell if their trial gets approved and funded by the government. Then there’s the trial in Portland, where they await FDA approval of the next phase of their clinical trial. We live our lives, but hold our breath. We try not to think of the future and live for today (cliché I know, but true). We walk on this road and trip and fall like Bridget, never knowing what’s ahead. But, we hold on tight and hope that time is on our side.

It is a bit quiet at home as Harrison left on vacation with his cousins to Vermont. This was an invitation he couldn’t pass up as there are woods, boats and swimming involved. The Strodes will celebrate the 4th with their private firework show and even take a trip to Niagara Falls. Not a bad deal for HJK!

Actually, Harrison is King of Travel as we went to Florida the week of June 22. My dear friend Anne and her son Charlie are there for a month and we were invited to come visit. I surprised Harrison, as he thought he was going to work with Dad, but we headed to the airport instead. We, of course, had an unbelievably great time. However, things at home were a bit volatile.

The Monday we left, Bridget had a small seizure with her nanny, Marita. As they were playing at her house, she called the ambulance and told them Bridget’s issues. They weren’t very good listeners as they didn’t even let her ride in the ambulance to the hospital!!! When I heard this, I almost flew off Anne’s balcony….being over a thousand miles away! Dave got to the hospital and let them have it. The chief called the next day apologizing, filling out a formal complaint and reprimanding the EMTs. This mistake will NOT be made again.

Needless to say, Bridget is the concern here. She was being weaned from one med, being introduced to another and with the extreme heat…it all qualifies as the perfect storm for a seizure. The rest of the week she was up and down, esp with motor control. When I returned on Sunday and then on Monday, she was miserable. Talking to our favorite nurse, Deb at Dr. Smith’s a couple times, we arranged Plan A, B and C. Plan C was to get admitted to the hospital and that was, of course, not ideal. Luckily, Plan A worked. We put 2 past drugs back into her regimen and scaled down the newer one (which was causing lack of appetite).

Within 12 hours she was happy again, eating and playing with her toys. Motor coordination is still shoddy, but we’re here to hold her hand. She’ll take yours and lead you right to the garage. This girl loves to go bye-bye!

That’s where we are today. I hope you enjoy your holiday and celebrate each little wonderful thing that is in your life. We do everyday.

For the upcoming Growing Cents of Style sale they are going to have two different opportunities to help raise some funds. First, they will hold a presale fund-raiser on Saturday, September 12th. They will be selling tickets to the presale where shoppers can gain entrance early – without having to stand in line – and shop before they open to the public. 100% of the ticket sales will go to Hope 4 Bridget.

The second fund-raising effort will be to set up Hope 4 Bridget as a consignor. Jenny is looking for donations of fall/winter clothing, shoes, accessories and baby gear that we can sell under this consignor number. 100% of the sales from these items will be donated back to Hope 4 Bridget. All Hope 4 Bridget items will be marked with a special sales tag so that shoppers will know that the items they are purchasing will go to the fund-raising efforts.

If you or anyone you know has any items that they would like to donate in honor of Bridget please let Jenny or I know. Jenny will be collecting items at her home in Barrington. The sale is fast approaching so any help in collecting items is greatly appreciated. Also, depending on the number of items she receives we may ask for some additional help in inventorying and tagging the items. In order to get everything prepared properly we will need any items by September 3rd. The Barrington sale is September 11th – 13th and then any unsold items will be transferred and sold at the Northfield sale September 18th-20th. Any items not sold at that point can be put into storage for future sales.

Please feel free to email or call Jenny or Sara with any questions.

Jenny Heath Welsh
jwelsh@caledonianinc.com
847-713-2250 home
847-909-3996 cell
www.growingcentsofstyle.com

A friend of Sara’s, Valerie Swack, is sponsiring a Mary Kay Cosmetics Sale in honor of Bridget. Thank you to her and her sister-in-law, Nicole Robbins.

To support Bridget, follow this link: www.marykay.com/nicolerobbins now through September 9th.

Please make sure you put the word “Bridget” in the comment box. The shipping is FREE and if you currently have a Mary Kay Beauty Consultant, you can still support Bridget with a one-time purchase. The golden rule will be honored for future purchases.

The Hope 4 Bridget fundraiser is open to the public, so please spread the word!

I have also spoken to the Director of the Battens Research and Support Association. We had a very good conversation full of useful information. He mentioned that Stem Cells, Inc may be opening another trial in conjunction with Doernbecher Children’s Hospital in Portland, OR. They had one phase with 6 children receiving stem cells in 2007. They were going to open another trial “mid-year” of 2009. So, we’re waiting to hear if this is plausible.

Uncle PJ and Dad are doing the leg work for trusts/ foundations and making a lot of useful connections in the fund-raising and Batten community. We’re extremely grateful. We will definitely post this information as we obtain it.

Beside the update on the business side of things, Bridget is doing pretty well. She started to regress with her motor ability as we weened her from some steroids. We’re now trying “pulse” therapy by administering a very full dose one day and nothing the next, alternating back and forth. In the next couple of days, she should see some more stable results. But, yesterday at Harrison’s t-ball game she was RUNNING in the park. That made my heart sing.

Thank you for checking in. God Bless all you followers!

Here are 2 websites to find out more:
http://www.ninds.nih.gov/disorders/batten/batten.htm
http://www.bdsra.org

We have a lot of things in the works.

First off, we’re in the midst of designing a website for Bridget.

Second, we’ve contacted the Director of Battens Association and the physicians in charge of clinical trials at Cornell through National Institute of Health. There’s also another avenue through Seattle. We will have all the information in Bridget’s website, so again please stay tuned and be patient.

Love and prayers to you and mostly to our angel.