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BCS restaurants raising awareness for Rett Syndrome through sale of new book

Published: Jan. 23, 2022 at 11:16 PM CST
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COLLEGE STATION, Texas (KBTX) - A Texas A&M professor has a daughter who lives with a rare genetic neurological disorder called Rett Syndrome, and a few local restaurants are trying to raise awareness by selling a book that raises money for research.

Clifford Fry describes his daughter Ashley as the most famous person in the family. She loves movies, music, and coloring, and they call her a teacher of love.

”Ashley is the light of our lives. She smiles all the time,” Fry said. “She gives love to everybody through her eyes, and she’s just a sweetheart.”

Her father says Ashley’s fame comes from the fact she was the first person in Texas for doctors to see with Rett Syndrome. It’s a genetic developmental disorder that Ashley began showing signs of at 18 months old.

”She started getting a very pasty look. She a few times screamed and grabbed her head,” Fry said. “She started losing the use of her hands. She lost any vocalization that was there,” Fry said. “She developed heel cords that were frozen and had to go through serial casting to get those down. She developed seizures at about age 4 and had about 50 seizures a day at one point. She developed scoliosis severely and had surgery when she was 11. She had severe breathing problems, too.”

Ashley was born in 1980, but her father says Rett’s Syndrome wasn’t recognized in the United States until 1983. It affects about one in 10,000 female births and leads to severe impairments that affect nearly all aspects of life. It’s a disorder that primarily affects girls because it’s a X chromosome problem, which is why most males with the disorder do not survive.

“There were several years where Rett Syndrome was not known and nobody knew what she had,” Fry said.

Those with Rett Syndrome require constant care. Breathing, eating, walking, and the ability to communicate are all things with which people battling the disorder struggle.

“The most difficult part to me is the day-to-day lack of communication. If she could just talk and tell us,” Fry said. “If she’s in pain, for instance, we don’t know what it is. She has difficulty controlling her hands, so you can’t do sign language. She can’t control her hands enough to tell us where pain is, and it’s even difficult to answer yes and no questions.”

But Fry says there is a silver lining.

”The gene problem is known that causes Rett Syndrome,” Fry said. “Rett Syndrome has been reversed in mice, even mature ones. There’s no gene known for Alzheimer’s, Parkinson’s, and a lot of other things, but it is known for Rett Syndrome. That’s the research that’s going on, and it’s not research where you throw some money at it and maybe in 50 years something will happen. This is all immediately going on.”

That’s why Fry says the current research being done is very promising. It’s also one reason why the owners of one of Ashley’s favorite restaurants, Paolo’s Italian Kitchen, saw a way they could use their platform to help.

Tai Lee is co-owner of Paolo’s, and he became a close friend of the Fry family through their patronage to his restaurants. He says Clifford was a regular at Veritas Wine & Bistro (which is now Solt), and they would also host a lot of group dinners for the Texas A&M Hagler Institute for Advanced Study, where Fry is the associate director.

“That’s how I first got introduced to him,” Lee said. “Of course, he his a big patron of Paolo’s Italian Kitchen, and his granddaughter also worked with us.”

Lee and his co-owners Paul and Jeanne Kahl are selling a book called Raising a Hand to raise awareness for the disorder which also helps fund research.

”I think if we can definitely do something to help out with this research and come up with a cure, I think the families in the future can definitely benefit from this,” Paolo’s Italian Kitchen Co-owner Tai Lee said.

Fry says the largest figures behind Raising a Hand are Grammy award-winning country music artist Clint Black, his brother Kevin, and his Clint’s Dave Clements. Kevin Black had a daughter who was diagnosed with Rett Syndrome and died when she was a teenager.

“What they did was go into music venues and take pictures of artists in concert raising their hand, and then they get permission from these artists to use that picture in the book,” Fry said.

Raising a Hand features dozens of famous musicians who have signed on to promote this cause. The book is available for purchase at Paolo’s, Solt, and Urban Table for $45. A majority of the money from those book sales will go directly to the International Rett Syndrome Foundation.

”I would be thankful for any kind of breakthroughs that help any of these girls. Ashley’s overcome so much,” Fry said. “There are many families going through a lot right now.”

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