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

Click here to find out more!
Grow With Love Boutique Trendy & Affordable Children’s Clothing, Accessories, Bedding and More

For more information on the community events, to view the inventory in person or to obtain an emailed catalog, please contact us at sales@growwithloveboutique.com.

You can check the progress of their website that is under construction at www.growwithloveboutique.com

Gail Heraty & Bridget Rapplean, Owners
Grow With Love Boutique, LLC

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.