Mom of boy with Williams Syndrome wants to put a face to this rare disorder

The Sault’s four-year-old Bryce Carson is a happy youngster, though dealing with a rare disorder known as Williams Syndrome.

The syndrome occurs in one in 10,000 births.

“I just want to put his story out there and put a name to what he’s dealing with. He’s going to learn differently in school,” said his mother Kirsty Carson, speaking to SooToday.

Williams Syndrome is characterized by developmental issues and may also be accompanied by heart problems.

Though May is Williams Syndrome Awareness Month, Kirsty said “no one really knows anything about Williams Syndrome.”

“There are a lot of intellectual and developmental issues (arising from the rare disorder), and heading into school it would be nice to have a little bit of information put out in the community as to what it’s all about, for educators and other people working in the schools.”

Kirsty, a dental hygienist now staying at home to care for Bryce, said she is currently making arrangements to ensure he has his special needs met in the classroom.

“A lot of Williams Syndrome websites say there are ‘Extraordinary Gifts, Unique Challenges’...I just want to share who Bryce is and what Williams Syndrome is,” Kirsty said.

“The more people know about what it is, the more accepting they’ll be. And that’s not just for Williams Syndrome, it’s about changing the perspective on anyone with any disability.”

“I actually had plans this year of doing some sort of event to raise awareness and also raise money for the Canadian Association for Williams Syndrome,” Kirsty said.

However, COVID-19 arose, with governmental restrictions against public gatherings of more than five people throwing a huge spanner in the works regarding Kirsty’s plans for an event. 

“That got put on hold,” she said good naturedly.

Bryce was airlifted from the Sault to hospital in London, Ontario just days after his birth in January 2016 for treatment of a collapsed lung.

“We were there about a week, and on our last day a doctor heard a faint murmur (upon examining Bryce) so they decided they would have to do an echocardiogram before they would discharge him, and on that echocardiogram they found he had a moderate heart condition,” Kirsty said.

Bryce was referred to the care of the Sault’s Dr. Kirk Zufelt, a pediatric physician at the Group Health Centre (GHC).

After another echocardiogram, Zufelt detected a problem and referred Bryce to Toronto’s Hospital for Sick Children (commonly referred to as SickKids hospital). 

Cardiologists at SickKids informed Kirsty and her husband Scott Carson that Bryce had Williams Syndrome.

Along with cardiac weakness, the syndrome causes developmental disabilities and seizures, most Williams Syndrome patients in need of assisted living to reach their full potential.

Bryce’s previously moderate heart condition became severe, the infant undergoing the ordeal of a seven-hour heart operation at SickKids when he was only five months old.

After his first birthday, and on more than one occasion, Bryce suffered episodes in which he lapsed into unconsciousness, then revived.

SickKids doctors then discovered Bryce also had epilepsy.

But, as is the case with many people who suffer from serious illnesses, Bryce is somewhat extra special.

“Aside from all the medical and developmental issues, they (people with Williams Syndrome) tend to be some of the most memorable people you’ll ever meet,” Kirsty said.

“They’re very social, with an open hearted approach to life. They don’t see anybody as ‘strangers.’”

“Anywhere we go, Bryce says ‘hi’ to people. In the grocery store he’ll go up to somebody and ask to have a hug. He’s very social, very outgoing. It’s an interesting syndrome and not many people really know anything about it,” Kirsty said.

“We find he has very specific things he’s into and tends to be really engaged in those things. The things that he says and the timing of them are on par…he’ll say ‘hello, how are you?’ when most kids wouldn’t do those kinds of things. The way he engages with adults is something that’s pretty amazing.”

“Since he was born it’s been an ongoing adventure of medical issues and developmental issues. A lot of the time, we (Kirsty and husband Scott) are explaining to medical professionals different things about what Williams Syndrome is.”

Kirsty gratefully credited the GHC’s Dr. Zufelt, his nurse, THRIVE Child Development Centre, his optometrist, dentist, Algoma Public Health (APH) professionals and others for helping in Bryce’s development to date. 

There is no medication to treat Williams Syndrome. 

“It all comes down to early diagnosis,” Kirsty said.

“The sooner they start in therapy (the better).”

“(A lot depends on) intervention and developmental therapy and ongoing medical supervision (the Carsons taking Bryce to SickKids for regular appointments).”

Despite it all, "if people saw the world through the eyes of someone with Williams Syndrome it would be a lot happier place...they’re happy and friendly, without any judgement. They don’t judge people. They just love everybody and nobody’s a stranger. It’s kind of special in that way,” said Kirsty, who also has a five-year-old daughter.

“Bryce’s life will hold lots of struggles and setbacks, but it’s also going to be a pretty exciting journey (as a parent) to take with him.”