Bridget Kennicott was born on November 11, 2004, to proud parents Sara and Dave and big brother Harrison.  The Carpentersville, Illinois family felt complete, with their energetic little daughter soon known as “Miss Busy B.”   She barreled her way into her toddler years, until the family met their first medical puzzle in 2008.  With no warning , the Kennicotts faced the frightening experience of carrying their daughter to the emergency room with a seizure.  It would be 16 months of testing, consultations, medications, and questions before a diagnosis in April of 2009 could be definitive that Bridget had late infantile Batten disease (LINCL).

According to Sara, “there is no preparation for devastating news like this.  We knew that our little girl struggled with health and development, this, however, was far beyond our imagination.”

“Our journey with Bridget is to take one day at a time,” says Sara. “We realize our efforts to help find a treatment may be too late for Bridget, but we forge ahead to fight for other children like Bridget.”

Through their shock, grief, disbelief and pain, the Kennicotts were determined to seek answers and find ways to bolster Batten disease research, which they discovered was underfunded and limited by being categorized as a rare disease.  Shortly after Bridget’s diagnosis, they created the Hope4Bridget Foundation to raise money for research and education in efforts to find a cure for late infantile Batten disease.

“We knew we needed to make this our mission, to raise funds to support the researchers investigating Batten disease,” Sara notes.  “We also knew we could not do this alone, so we began networking and conversing and working with BDSRA,” she says.  “Through these relationships we began to learn about the scientists and laboratories that needed funds to further their research that could lead to a treatment for LINCL. Working alongside BDSRA kept us up to date in regard to what research was out there.”

As a member of the collaborative of family foundations that join with BDSRA in funding grant recipients through the RFP process, the Hope4Bridget Foundation has provided crucial funding of for a range of research in LINCL.  Drug discovery, identifying biomarkers, enzyme replacement therapies and developing translational projects for Batten disease have all been supported by foundation grants totaling nearly $200,000 in the last five years.  It is a partnership that has generated tangible advances toward treatment, and it has sustained their hope that someday Batten disease will have a library of treatments available that their daughter does not have.

“In this partnership, we can accomplish so much more when we work toward the common good. We find this comforting – knowing that it is a collective group – there is power in numbers and a common goal,” Sara says. “We are not alone out here fighting Batten disease. We have support, love, friendship, and the most relevant resource for finding projects to fund through BDSRA.”

“It is a blessing that we can work together in order to find a treatment and ultimately a cure so that no more children will have to suffer through this horrible disease,” she adds. “We will always have hope for a cure.  We will always have hope for Bridget.”

Link to for more information on the Kennicott’s efforts to fight Batten disease.