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 loving teacher.
“Ashley is the light of our lives. She smiles all the time,” Fry said. “She gives love to everyone through her eyes, and she’s just a sweetie.”
Her father says Ashley’s fame comes from being the first person in Texas doctors saw with Rett syndrome. It’s a genetic developmental disorder that Ashley started showing signs of when she was 18 months old.
“She started to look very pasty. She screamed a few times and grabbed her head,” Fry said. “She started to lose 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 them off. She developed seizures around age 4 and had about 50 seizures a day at one point, she developed severe scoliosis and had surgery when she was 11. She also had severe breathing problems.
Ashley was born in 1980, but her father says Rett syndrome was not recognized in the United States until 1983. It affects approximately one in 10,000 female births and results in severe impairments that affect nearly every aspect of the life. It is a disorder that mainly affects girls because it is an X chromosome problem, which is why most men with the disorder do not survive.
“There were several years when Rett syndrome was not known and no one knew what she had,” Fry said.
People with Rett syndrome require constant care. Breathing, eating, walking, and the ability to communicate are all things that people with the disorder struggle with.
“The hardest part for me is the lack of communication on a day-to-day basis. If she could just speak up and tell us,” Fry said. “If she’s in pain, for example, we don’t know what it is. She has trouble controlling her hands, so you can’t use sign language She can’t control her hands enough to tell us where the pain is, and it’s even hard to answer yes and no questions .
But Fry says there’s a silver lining.
“The genetic problem is known that causes Rett syndrome,” Fry said. “Rett syndrome was reversed in even the most mature mice. There is no known gene for Alzheimer’s disease, Parkinson’s disease and many other things, but it is known for Rett syndrome. It’s research that’s ongoing, and it’s not research where you invest money and maybe in 50 years something will happen. All this happens immediately.
That’s why Fry says the ongoing research is very promising. It’s also one of the reasons the owners of one of Ashley’s favorite restaurants, Paolo’s Italian Kitchen, found a way to use their platform to help.
Tai Lee is co-owner of Paolo’s and has become close friends with the Fry family through sponsorship of his restaurants. He says Clifford was a regular at Veritas Wine & Bistro (which is now Solt), and they also hosted many group dinners for the Texas A&M Hagler Institute for Advanced Study, where Fry is the associate director.
“That’s how I first met him,” Lee said. “Of course, he’s a big patron of Paolo’s Italian Kitchen, and his granddaughter has also worked with us.”
Lee and his co-owners Paul and Jeanne Kahl are selling a book titled Raise your hand to raise awareness of the disease which also helps fund research.
“I think if we can definitely do something to help with this research and find a cure, I think families in the future will definitely benefit,” said Tai Lee, co-owner of Paolo’s Italian Kitchen.
Fry says the biggest numbers behind Raise your hand are Grammy-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 as a teenager.
“What they did was go to concert halls and take photos of artists in concert raising their hands, and then they got permission from those artists to use that photo in the book,” said Fry said.
Raise your hand features dozens of famous musicians who are committed to promoting this cause. The book is available for purchase at Paolo’s, Solt, and Urban Table for $45. The majority of the money from these book sales will go directly to the International Rett Syndrome Foundation.
“I would be grateful for any type of breakthrough that helps one of these girls. Ashley has overcome so much,” Fry said. “There are a lot of families going through a lot right now.”
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