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Charlotte's cause for hope

Organized by: Addison Willams

Addison's Photo

June 13, 2016


Charlotte was just like any normal little girl, a smile machine who is tall for her age, graceful, sociable and an exceptional athlete. At 2 1/2 years old, our daughter began having trouble finding the words to convey her thoughts, which led to a speech therapist who assured us she would grow out of it. Shortly after, her coordination began to subtly diminish, along with her interest in playing sports. Charlotte was then diagnosed with autism, which didn’t ring right with her parents. Last Christmas Eve, she tripped over a present and her arm shook when she regained her footing. Shortly after, a dose of Tamiflu led to convulsions. Again, doctors told them not to worry. Fortunately, they captured the convulsions on an iPhone, which led to an EEG that showed the first signs of abnormal brain activity. An MRI followed, along with another diagnosis, this time Leukodystrophy, which is the degeneration of white matter in the brain. A gene sequencing procedure followed, and then in March, a geneticist at UCLA finally had a handle on why Charlotte was changing. “I was there with my wife, and the meeting went something like this,” Gray recalled. “He told us, ‘Your daughter has Batten disease, it’s incredibly rare, it is fatal. And there is no cure. They’d found another person afflicted by this variation of the disease in India, so the diagnosis was confirmed. I asked if there was anything else he wanted to say to me, and he handed me some brochures.” The Grays by now had been reading voraciously about all of the previous diagnoses, and before leaving, they had one other question. “I’d read with inherited disorders, there could be a 25% chance of a sibling having the same disease, and I asked about my daughter Gwenyth, and we scheduled a blood test,” Gray said. “I got the news on Charlotte on March 2, and then a week later we were told that Gwen had it, too.” please help us raise money to fight this terrible disease and cover all expenses necessary!


Organized by

Addison Willams

This is a direct to organizer fundraiser.

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