What a blitz of PR! It’s amazing how people reach out and want to help. We’ve felt this way all along our journey with Bridget. And today was no different. In the past 8 days, we’ve had one radio discussion and 2 television appearances to spread the word of Batten Disease, Bridget and our imminent fundraising concert. All of these were because of people who know us from our past and present and are willing to connect to they’re networks and help us spread the word. We are so appreciative.

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!

The Read-a-Thon was a HUGE success – drawing over 500 children to the basketball courts of the field house on Monday, January 18th and raising over $20,000 for the Trust and Foundation. The children participated in silent reading, buddy reading and group reading, as well as mystery readers ranging from high school athletes and musicians to politicians, firefighters, and Mrs. Illinois. The kids participated in short activities like learning pom routines and the largest round of hokey pokey I have ever seen!

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

Our Make a Wish Trip was truly unforgettable! We had a fantastic time with our family, all the wonderful people at the parks and hotels and especially with Bridget. We began with the Strodes (Aunt Julie, Uncle Steve, Carter and Katherine) and the Jensens (Uncle PJ, Aunt Kathleen, and Madeline) at Magic Kingdom on Monday. Nothing will ever compare to the special family time and fun we had there and with each other. We did it all: It’s A Small World, Pirates of the Carribean, Peter Pan, Haunted Mansion, and many, many more rides. The day culminated with meeting the princessess, fairies and the most wonderful Mickey and Minnie then the fireworks show at the castle. When we woke the next day, I told Dave that whatever we do the rest of the week will never compare to THAT day when we were all together celebrating Bridget and Disney.

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!!!!