WILTON, N.Y. (NEWS10) – The push to find a cure for a rare and debilitating disease is getting some star power.
Celebrities are taking to social media to raise awareness for Type 2 Batten. They are asking people to donate to a new foundation created to fund research for treatment.
Their efforts are hitting close to home to a local woman whose daughter is battling the debilitating disease. She’s been fighting to raise money for a playground for children with disabilities, and she hopes to break ground in time for her daughter, Kaitlin, to see it.
Hollywood film producer Gordon Gray started the foundation, Charlotte and Gwenyth Gray Foundation, after he discovered his two young daughters had been diagnosed with the fatal disorder.
“Their development deteriorates,” local pediatrician Dr. James Saperstone said. “Unless you know that there’s a family history of this, you’ll probably have no idea that this is going to be striking your child.”
That’s what happened to Becky Bowman’s daughter Kaitlin. In 2008, Kaitlin had her first seizure at 3 years old.
“Before that she was completely healthy,” Bowman said. “Walking, talking, locked me out of the house; everything a 3 year old does.”
Eight months later she was diagnosed with Type 2 Batten. She stopped walking at five and stopped talking at six.
“It’s difficult,” Bowman said. “As a mother, it’s really hard to see your child go through.”
Since September, Bowman has been fundraising for a playground in Kaitlin’s name where children of all abilities can play together.
Her benefits have caught the attention of country music singer Billy Dawson, and she’s $33,000 short of the $95,000 goal. But it’s a race against the clock.
“The day that she was diagnosed , I was told that she would not live past 10,” Bowman said.
In August, Kaitlin will celebrate her tenth birthday.
Bowman said Gray’s foundation could save a life for future families.
To those families, she said to absorb every little moment because she’d gladly go back to the days when Kaitlin would lock her out of the house.
“Every time they tug on you or bug you in the store, ya know, just love it,” she said. “Because I would do anything for her, for her to bug me again.”
There are many ways for people to help Bowman reach her goal by the end of summer.
The 7th annual AIM Golf Tournament will take place at noon on Monday at the Ballston Spa Country Club.
A benefit will take place on August 8 at Howe Caverns and another will take place on August 29 at Eagles Club in Saratoga Springs. They will include live bands, free food and family activities.
Learn more about Kaitlin’s Journey on Facebook.