A Child, a Rare + Fatal Disease, Plus Hope.

Via on Jan 11, 2012

Hoping and Praying for the Future

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A teacher at my son’s elementary school, Sara Kennicott helped my son to read. He couldn’t wait to see her on the days he left the classroom for his special reading sessions. This is the story of Sara’s little girl, Bridget. I hope you’ll read and share it.

Bridget is a beautiful little girl who came into our lives on November 11, 2004. She had so much spirit from the earliest moments as she arrived 3 weeks early winning the affection of all, including her big brother Harrison. From the time she could walk, she’s loved to run, climb and go fast especially to music or the sound of the TV. She had spunk and sass and kept us on our toes. Bridget has been a love bug from the beginning, often known as the “Mad Hugger” for her tight squeezes.

For the first 3 years Bridget developed normally, reaching each milestone on schedule, with exception of her speech. We provided her with lots of attention and assistance in this area with the Early Intervention program and practice at home. She made slow, but steady progress and we celebrated each success. However, Bridget developed seizures in February, 2008 and we had to focus all our attention on keeping her seizures at bay. From that moment on, it has been a very windy road of doctors, tests and uncertainty. And now, we are faced with her diagnosis of Late Infantile Neuronal Ceroid Lipofuscinosis (LINCL) often referred to as Batten’s Disease. The prognosis is grim, but we pray everyday that modern medicine can find Bridget and other children like her a cure. We will always have hope for a cure and always have hope for Bridget.

More about Batten disease.

Batten disease is a rare neurological disease that is degenerative over time, taking away a child’s ability to eat, walk, see and communicate. Presently, it is always fatal. Bridget is now 7 years old.

In order to help with the disease, the Kennicotts started the Hope4Bridget Foundation in  honor of Bridget. Not only do they raise funds to help support Bridget—insurance coverage is not available for her needs and care—they raise funds to support the few scientists and doctors working on a cure. Fewer than 400 children in the US have this type of disease, which means it receives very little research attention.

How you can help.

  1. Donate to the Hope4Bridget Foundation
  2. Take action to support Unlocking Lifesaving Treatments for Rare diseases (ULTRA) by asking your Representatives to co-sponsor HR 3737. Click HERE. ULTRA will improve access to the FDA’s Accelerated Approval process for very rare diseases, provide a more predictable regulatory process, bring down development costs, and spur investment in the development of treatments.  Additionally, ULTRA requires the FDA to use the best science available, ensuring treatments are safe and effective and reach patients sooner.
  3. Share Bridget’s story with everyone you know.

* Originally posted on my blog, Putting It Out There.

Photo of Sara + Bridget by Thomas Balsamo.

About Lynn Hasselberger

Lynn Hasselberger lives in Chicagoland with her son, husband and two cats. She loves sunrises, running, yoga, chocolate, and NYR, and has a voracious appetite for comedy. In her spare time, she blogs at myEARTH360.com and LynnHasselberger.com. A "Green Diva" and social media addict, you'll most likely find Lynn on twitter (@LynnHasselbrgr & @myEARTH360) and facebook. She hopes to make the world a better place, have more fun, re-develop her math skills and overcome her fear of public speaking. Like her writing? Subscribe to her posts.

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