Batten Disease hits Home

Meet Charlotte and Gwenyth Gray.

At two and four-years old, the sisters’ parents, Kristen and Gordon, assumed their daughters’ lives would continue to be just as sweet, and then one day, things changed.

“She started pre-pre-school two times a week at two years nine months. She was definitely in the same developmental level, if not above her classmates and about halfway through the year, I noticed that her fine motor wasn’t getting any better,” said Kristen Kaiser Gray, Mother of Charlotte and Gwenyth.

After numerous trips to the doctor, Charlotte was diagnosed with a degenerative brain disorder called Batten Disease. An extremely rare diagnosis, in which brain cells die, leading to loss of motor skills, eye sight and eventually death.

Devastated with the diagnosis, there was still more bad news to come.

“With Batten Disease your sibling has a 25% chance of having the disease and being an effective carrier,” said Kristen Kaiser Gray. “We had her tested a week later for that mutation and she has the exact same thing.”

Though Gwenyth has yet to see symptoms, Charlotte’s health has already begun deteriorating.

“She has a hard time walking, she needs help getting up and down from things. She’s struggling right now, She is having a hard time,” said Kristen Kaiser Gray.

Once diagnosed, a patient is typically given eight to ten years to live. With no effective course of treatment available, the California family is in a race against time seeking a cure.
To that end, Gordon, a well-known Hollywood producer, created a short video about his daughters’ plight, gaining the support of some Hollywood heavyweights and several scientists and doctors.

They began the Charlotte and Gwenyth Gray Foundation to Cure Batten Disease, hoping to raise $12 million for research.

“We were able to get our message out about Batten Disease and curing the girls and raising a substantial amount of money in a short time. It’s a start and we can start doing the filings for the FDA and establishing a team to get a plan together to treat the girls.

They decided to bring their fundraising efforts to Kristen’s hometown of Naperville, with help from her childhood friend Casey Mccormick.

She’s taken it upon herself to start organizing a fundraiser at Meson Sabika this September.

“Every single person I told about it, whether they were friends with her in high school or friends of mine now asked how they could help. So we have a group of 12 amazing ladies who are working like it’s their full time job to raise the most amount of money that they can and so we have had just amazing support,” said McCormick.

It’s the first step in a long journey to try and save their daughters’ lives.

“For our children, they can’t fight for themselves, there’s no other reason you have to do it for them, it’s not life without your family,” said Kristen Kaiser Gray.

About a month since the foundation’s start, just over $1.6 million have already been raised.


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