We have 2 wonderful opportunities to raise money for our foundation and Batten disease research.
1. Shop at Urban Flair and order a beautiful Hope necklace in silver and sparkles.
Our dear friend, Judy, who owns this lovely boutique has generously designated a % of the proceeds to H4B. Here are her words:
I was drawn to this necklace because of the meaning and beauty of the word ‘hope’. Hope is a common sentiment that we all share when we wish for good things and a positive outcome. It is engrained in each of us to have and to give hope to those that we care about. Given the sentiment of this necklace, I thought it was only appropriate to donate a portion of the proceeds to support the Hope 4 Bridget Foundation. I will donate 15% from each sale to support this cause. In addition, I will extend a 10% discount to those who place a ‘pre-order’ for this custom-made necklace in the month of January. Orders can be placed on-line, please enter promo code ‘hope4bridget’ on the checkout page to receive the 10% discount. Whatever you hope for, I wish you the best, always!www.shopurbanflair.com/new/hope-in-silver/prod_295.html

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

All is Calm…..most days. We’ve had a busy fall and beginning to winter. Going back to school was an adjustment, but Bridget handled it beautifully. She now attends Countryside School where she has her own special classroom, as well as participates in the regular ed. Kindergarten class. Her new teachers are outstanding (yet for those of you from ELC, we will miss you eternally). I had the opportunity to introduce Bridget to her “peers” (yes, they are a year younger) and it was quite a treat. I made a book about Bridget including activities she used to do like celebrate her birthday, carve pumpkins, dress up, visit Santa , go swimming, etc. I wanted the kids to know that Bridget is (was) just like them. I wanted them to know she enjoys doing the same things they do. Then I had to explain how she got sick and how her legs don’t work like they used to or her eyes. It was remarkable to see the joy of meeting someone new and the compassion they felt for Bridget all in the same moment. Children can be utterly amazing. She’s had the chance to go on field trips with the children and come to their room to do projects and music time. I told the kids how much Bridget enjoys her hand being held and some new friends clamor to get the chance. Makes you feel good when you’re a mother- knowing that your child is liked and has friends. That’s really all you ever want for your child- to be happy. I’d like to think she is.

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.

I know, I know….I haven’t caught our journal up in a LONG time. My apologies. In reference to the ever famed cliché “No news is good news,” this applies for our Bridget. We’ve floated through summer and are now embarking upon a new school year. Needless to say, I will update you on our Foundation and summer.

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.