Sharing support

“Fragile what?”

When Matt Rhodes explains that both his son and daughter have a rare genetic disorder called Fragile X syndrome, that’s usually the response he gets. However, fellow Hoover resident Tim Rau knows exactly the parenting struggle that Rhodes faces.

Fragile X affects fewer than 200,000 people in the U.S. per year, and its symptoms range widely among individual cases. The most common effects are mild to severe intellectual disability, anxiety and hyperactivity, as well as physical changes and occasionally seizures. It is also inherited through families, either through carriers or family members with the full syndrome.

 “You turn into a genetic scientist when you learn that your family has this,” said Rau, a Bluff Park resident.

The Rhodes and Rau families, despite living in the same city, did not meet until they both attended a Fragile X convention in Atlanta in 2006. The shared experience of Fragile X made them friends and sources of support for each other.

“It took going to Atlanta to meet someone who lived 10 minutes away from us,” said Rhodes, who lives in Altadena Woods.

“Ever since then we’ve kind of clung together and went through the struggles together,” Rau said.

It also revealed how different each case of the syndrome can be.

Matt and his wife, Elizabeth Rhodes, a math teacher at Berry Middle School, have two children with Fragile X: 16-year-old Samantha at Spain Park High and 11-year-old James at Rocky Ridge Elementary. Despite the syndrome’s hallmark trait of anxiety, Samantha performs in the school color guard, even at a state championship game in Auburn. Rhodes said she can have more difficulty with time management and studying than the average student, but overall is mildly affected.

James has more serious effects, including ADHD. He splits his school days between special education and regular classes, but is highly social at Rocky Ridge and also active in water skiing, biking, Special Equestrians and Miracle League baseball. He has a good memory and vocabulary, but Rhodes said his son’s activity level is somewhat unusual for Fragile X.

“He knows a lot of people in Rocky Ridge school, and a lot of people know him,” Rhodes said.

Rau and his wife, Leanne, have a 12-year-old son, Justin, with Fragile X, as well as a daughter, Lindsey, at Hoover High. Justin is highly social like James, but Rau estimates that his son is at only a first- or second-grade level in reading and math. Justin takes regular social studies and science classes at Simmons Middle, and in the afternoons he helps with directing the parents’ cars as they pick up students. He will participate in Miracle League baseball, on the same team as James, but otherwise is uninterested in sports and more active hobbies.

Parenting a child with Fragile X requires a lot of structure and scheduling. Rhodes said James does not do well with sudden changes in his routine and can come “unglued” over something such as a field trip getting rained out. He said that for kids with Fragile X, there can be a bunch of small irritants that build up until something finally triggers an angry or upset reaction.

“We have to take a lot more precautions when we go places and plan things. There’s things that we can’t do as far as typical family vacations. Disney is not really an option without other provisions in place,” Rhodes said.

It also changes the way they plan for the future. Rau said that things most parents take as a given — college, a career, independent life — could be out of reach or look very different from how they pictured it.

“Your expectations kind of shift a little bit,” Rau said.

When the Rhodes and Rau families each first received their Fragile X diagnoses, neither had other families to turn to. Instead, they had the Internet, which Rhodes said was full of worst-case scenario stories that were scary but not close to their own real-life experience.

“Don’t try to define your life by an article you read on Wikipedia,” Rhodes said. “If we read what our kids couldn’t do, we wouldn’t be doing any of this stuff. My daughter wouldn’t be performing in front of hundreds and thousands of people.”

To fill that information gap, the two families lead the North Alabama chapter of the National Fragile X Foundation to be a resource and support for area families. They also participate in Advocacy Day, which the national foundation puts on in early March each year to raise awareness of Fragile X and funding support for research on Capitol Hill. Rhodes and his wife have gone eight years in total, and 2016 was Rau’s first year to attend.

Rhodes said there were about 80 people for the first Advocacy Day he attended. This year, there were 170. He said that in the eight years since he first went, he has seen concrete examples of change in new legislation and funding.

“Going to Advocacy Day is one of the more empowering things you can do as a parent with a child with intellectual disabilities or special needs. This is where you can have a really direct impact on their future,” Rhodes said. “The big thing for me is something I can do. There’s not a lot of things you can do to affect your child’s future like that. I can’t say enough about it.”

Both Rhodes and Rau are hoping that these national and local efforts will make the community more understanding and aware of children with Fragile X and other intellectual disabilities, so fewer people will respond with “Fragile what?” More awareness also means fewer families will feel as alone and clueless as they did when they started out.

“It’s not the end of the world. It’s OK, you just have to shift gears a little bit,” Rau said.