David and Sara Kennicott's daughter, Bridget, was born a spunky and spirited little girl in November of 2004. She loved to run around and dance and gained the attention of anyone who was close to her quickly.
She was a healthy child, so when she had a seizure in early 2008 and then continued to suffer from seizures after this episode, it was obviously a concern. From that moment on, the Kennicotts embarked on a new journey of doctors, hospitals and tests to try to figure out why their daughter was having these seizures. After a long process, Bridget was finally diagnosed with Late Infantile Neuronal Ceroid Lipofuscinosis (LINCL), often referred to as Batten's Disease.
Batten's Disease is a neuro-degenerative disease where persons affected with it lack an enzyme that breaks down fat in their neurons. It is very difficult to diagnose, is extremely rare and it currently has no cure. About 100 people in the United States have been diagnosed with the late-infantile version.
When David and Sara received the diagnosis they were devastated, but knew they had to move forward. "The doctor showed us literature and he emailed me different articles on what to do. And, we started doing a lot of research."
The Kennicotts also have a son, Harrison, who is eight years old. They have found support in reaching out to other families who have children with Batten's Disease. "We found other kids with the same symptoms who have been diagnosed and reached out to them." Ironically enough, though this disease is so rare, there are three other families in the Chicagoland area who have children with the infantile version of the disease. There is also a national organization - bdsra.org that has been a tremendous support system for the family.
Family, friends and Barrington residents heard about Bridget's condition and wanted to help, so the Kennicotts decided to start a foundation called Hope 4 Bridget to raise funds and awareness for Batten's Disease research. There have been several fundraisers in Barrington like a Ralph's World concert and a Read-a-Thon, where 500 people attended. Many others hold their own events and give proceeds to the Hope 4 Bridget Foundation. Such is the case with Growing Cents of Style, a local children's consignment clothing boutique.
"People just volunteer and want to help out. Most of them just come to us."
Bridget is six years old now and medically stable. "She will let you know if she is uncomfortable or in pain, but she can not talk or walk," Mrs. Kennicott said. She is able to go to school for a couple of hours everyday and seems to enjoy it. "She gets excited and she LOVES music!"
To date, the Foundation has raised around $125,000 to go towards research and medical care for Bridget. To learn more about Batten's Disease or to make a donation, visit www.hope4bridget.com.