Join us in the fight against Late Infantile Batten Disease.
We will always have hope for a cure and always have hope for Bridget.

Portraits by Thomas Balsamo

Portraits by Thomas Balsamo

Latest News

01.28.2014 Harmony 4 Hope- Honors World Rare Disease Day

01.28.2014 A Birthday, Broken Bone, Benefit and other Ballads…

10.21.2013 A Fifth Season, Nov. 16th

09.22.2013 Shop for Bridget!

05.28.2013 Lessons Learned

Mad Scientist

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.

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