Boy dances through pain of rare genetic disease

Near a playground at McKinley Elementary School, 10-year-old Donovan Rivas does a kind of victory dance.

His rare connective tissue disease – which has caused holes in his lungs, back and neck pain due to scoliosis, four aneurysms in his aortic route, and requires that he wear foot and finger braces, and his stomach be flushed out every other day – doesn’t keep him from enthusiastically dancing to one of his favorite songs: Silentó’s “Watch Me (Whip/Nae Nae).”

“Honestly, if you didn’t know he had this disease, you probably wouldn’t know at all,” said his 16-year-old sister, Rayne Rivas. “He’s such an outgoing kid. He acts and plays as if he’s normal, even though he’s not.”

Donovan likes to think of himself as unique.

“Some kids are lucky to have this disease,” he said. “What I mean by that is some things that other humans can’t do, we can do, like praying behind our back and being flexible.”

(Donovan can amazingly put both his arms behind his back and touch his palms together, fingers pointed upward.)

His mother, Kerry Rivas, says Donovan is among only 50 people in the world who have been genetically confirmed with having Shprintzen-Goldberg syndrome. It causes Donovan’s connective tissue, the “glue” that should hold everything together in his body, to become loose.

His mother describes it like an old, stretched out rubber band. Instead of bouncing back into place, the rubber band keeps stretching. That makes it easier for Donovan’s joints to pop out of place.

People can support Donovan and his family during a fundraiser at 6 p.m. Friday, at NorthPointe Community Church. Money raised will go to support things that aren’t covered by the family’s insurance, like a chest brace to keep Donovan’s bones in place, and annual trips to special medical conferences, where the Rivas family advocates for a cure.

Kerry Rivas says the oldest known person with Donovan’s disease was in their 40s.

Despite Donovan’s numerous surgeries – which included a skull operation to make his head larger as an infant – the Fresno boy has stayed positive.

“He’s wise beyond his years,” his mother says. “We had a friend that passed away from cancer, and getting ready to go to the funeral, he goes, ‘I’m excited about today.’ I said, ‘What do you mean you are excited?’ He goes, ‘We are going to celebrate Peter’s new birth in heaven.’ He was 8.”

Still, sometimes he feels down.

“In the hospital, I was like, ‘Seriously, does this need to be happening?’ ” Donovan recalls. “And sometimes I was just really heartbroken when I was in the hospital, not being able to see my dogs and do fun things.”

Thinking of his family helped him get through it.

“I like my family because they are nice and good people.”

Not being able to play on his school’s baseball team also has been hard.

“I had to learn it was OK not being able to play baseball. I had to get through it.”

He’s taken the hardships and looked at them in a new light.

“It’s cool being an inspiration to others. I hope to make people feel OK that they have this disease.”

He plans to keep doing just that during the Friday fundraiser.

He has a message for people with his disease: “Even though you aren’t like other people, you still have differences that make you stand out.”

This story was originally published May 2, 2016 at 8:59 PM with the headline "Boy dances through pain of rare genetic disease."