VALLEY CITY, Ohio — May is Williams Syndrome Awareness Month, and of you haven't heard of it—you aren't alone. That's why a Medina County family is working to raise awareness to the rare condition, and they're using the smile of a 6-year-old boy named Matthew to do it.
"Matthew, the easiest way to describe him is a ray of sunshine," said Katie Droes, Matthew's mother. "He brings joy to everyone he meets. Every day he wakes up with a huge smile on his face and he goes to bed with a huge smile on his face."
It's a contagious smile. He has it on his face pretty much every second. But the first few years of Matthew's life weren't the easiest.
"He had kind of a rough birth. He ended up having some surgery for a tumor in his stomach," Droes said. "Matthew started showing some developmental delays, I would say, around nine months is when we really noticed it."
Both of Matthew's parents are teachers, so it was in their nature to research and find answers to what was causing those delays.
The Droes family had their theories, but none of the guesses were ever correct.
"We were taking him to several different hospitals around here, national hospitals, trying to get answers for him. We were like, 'Is it autism? Because that's a prevalent thing," Droes recalled. "No one quite knew what it was; no one quite knew. It was like—my husband and I said it was like playing Whack a Mole. We're like 'Okay, he has this, he has this,' but nothing tied it all together."
After five years of questions, the Droes family decided to get genetic testing done on Matthew. That's when they finally got their answer.
"We found out we had to wait a long time for genetic testing. And so when we found out—about nine months later, that Matthew has Williams Syndrome," Droes said.
Williams Syndrome is a rare genetic condition that affects around 1 in 10,000 people. Those with it have deleted genes.
Matthew is missing about 29 genes. Because they are deleted in his DNA, it leaves him up for a range of medical, developmental, and cognitive delays and issues.
For many with Williams Syndrome, the condition can present cardiovascular issues, kidney anomalies, and gastrointestinal problems, particularly because it deletes a key component of connective tissue called elastin on chromosome 7. Matthew is part of around 20% of people with the syndrome that doesn't have a heart condition as a result.
Matthew's lack of elastin can cause his voice to be horse after speaking a lot. He has some developmental delays and some cognitive abnormalities—but for the most part, Matthew is a healthy kid.
The syndrome does present itself, for Matthew, with a sensitivity to sound. The sound he enjoys the most is an NFL quarterback calling an audible.
"Any individual with Williams Syndrome...they have these passions and they find one thing and they just want to know everything about it. Matthew has a few of them, but one of them is football," Drose said. "When he's watching football on TV, he's listening to what the quarterbacks are trying to call, and so that's what he's so interested in—the quarterback cadence."
Matthew has a few football helmets—an Ohio State Buckeyes helmet, a Green Bay Packers helmet (because he enjoys watching Aaron Rogers), and, of course, a Browns helmet. He puts the Browns helmet on when he watches games and dons his favorite player's jersey—Nick Chubb.
"I pretend to be a football player because I’m speedy fast," Matthew said.
Matthew's passion for football is only rivaled by his positive energy and that contagious smile. In fact, Williams Syndrome is often called the happy syndrome because people with the condition often have outgoing, friendly personalities. That is Matthew to a T.
"What do you ask everybody? If they could be your—" Droes said as Matthew looked up and finished the sentence, "Best friend!"
The Droes family shares Matthews's story and smiles in hopes it will raise awareness for the rare condition, aiming to let people know what it means to have Williams Syndrome.
"We want people to know not only that this exists and that people have this syndrome, but also the amazing personality and individuality that people with Williams Syndrome can bring into your life," Droes said.
In order to do that on a bigger scale, the family is organizing a Walk for Williams event. They expect to have several other people in attendance who, like Matthew, have Williams Syndrome.
The event will be held on June 10 from 10 a.m. to 1 p.m. at Mill Stream Park in Valley City.
To learn more about the event and Williams Syndrome, click here.
Watch live and local news any time:
Download the News 5 Cleveland app now for more stories from us, plus alerts on major news, the latest weather forecast, traffic information and much more. Download now on your Apple device here, and your Android device here.
You can also catch News 5 Cleveland on Roku, Apple TV, Amazon Fire TV, YouTube TV, DIRECTV NOW, Hulu Live and more. We're also on Amazon Alexa devices. Learn more about our streaming options here.
