TIPP CITY — When their daughter Leah was diagnosed with Rett syndrome, even her doctors didn’t know much about it. Now Steve and Lisa Hatton of Tipp City are trying to raise awareness for the little-known syndrome.
“When you mention Rett syndrome, people look at you like, ‘What is that?’” Steve Hatton said. “‘I’ve never heard of that,’ is the most common response.”
Rett syndrome is a rare neurological disorder that almost exclusively affects girls. It typically develops in the first two years of a child’s life and leads to severe impairments. Most babies with Rett syndrome develop normally at first, but begin to lose skills they previously had — like the ability to crawl, walk, use their hands and communicate.
With the help of Complete Fitness in Tipp City, the Hattons have planned a fundraiser for the International Rett Syndrome Foundation (Rettsyndrome.org). The family also recently completed a fundraising effort for a service dog for 6-year-old Leah.
The event, a Zumba class offered by Complete Fitness, will be held on Saturday, Oct. 14, from 9-10 a.m. at 130 E. Broadway in Tipp City. There is a $7 entry fee, which will be donated to Rettsyndrome.org. There will also be donation jars onsite, Hatton said.
“They’ve spent millions and millions of dollars on Rett syndrome research. There’s so much hope because they’ve reversed it in the lab,” Hatton said. He explained that researchers have been able to reverse the syndrome in mice. “That’s where we come in with the awareness. We’re hoping the more we push it, the more we make people aware of it, the more funding that might get generated toward this research.”
Roughly one out of every 10,000 girls is affected worldwide every year, Hatton said. Rett syndrome attacks the X chromosome, he explained.
“When they’re developing in the womb, a girl has that other X chromosome to carry her on,” he said. When the disorder affects a boy, the pregnancy usually ends in miscarriage.
The disorder affects nearly every aspect of a girl’s life. Symptoms include loss of speech and motor control, scoliosis and fragile bones, seizures, compulsive hand movement, irregular breathing, extreme anxiety, gastrointestinal issues, impaired cardiac function and tremors.
“Most of those, Leah, my daughter, has already,” Hatton said.
When Leah was about 2 years old, the Hattons began taking her for testing. They had noticed she was no longer using words she’d previously learned.
“We noticed over a period of time, slowly,” Hatton said. “Deep down in our hearts, we knew something wasn’t right.”
At first doctors suspected Leah might be autistic, but they referred her for further testing. When the Hattons received the diagnosis of Rett syndrome, even the doctors they were seeing at the time didn’t know much about the syndrome.
“I had no idea what it was. And the guy told me, ‘Well, the best thing I can tell you is to look it up on the internet.’ Well, that was the worst thing they could have told me,” Hatton recalled.
Despite being unable to speak, Leah knows what she wants and has her own way of communicating it, Hatton said.
“When she wants something, it’s like she’s staring right through it,” he said.
Technology has made “leaps and bounds” in enabling girls like Leah to communicate through eye-tracking technology, Hatton said.
“It has icons like our iPhones do and they’ll say ‘I love you’ or ‘I’m hungry’ and these girls are trained to lock on to whatever icon they’re feeling at that moment and the machine will speak it for them,” Hatton said. “I’ve never heard my daughter say, ‘I love you.’”
When they first set out to raise awareness, they weren’t sure if they wanted their daughter to be the “poster child” for the syndrome.
“But Leah’s the only one in Tipp City, that we know of, that has this. Maybe even in Troy,” Hatton said. The family lived in Troy before moving to Tipp City. “So if Leah can’t do it, who else can?”
Reach Cecilia at firstname.lastname@example.org.