Miracle Monday: Meet the 3-year-old with a rare condition

On this Miracle Monday, we meet a little boy with something you’ve probably never heard of or seen until now.

Grayson Somaru was born with a rare condition called Beals syndrome, which is uncommon.

Grayson had to go through genetic testing multiple specialists just to find out his diagnosis.

Unfortunately, he does have a severe form of it.   

Beals syndrome is inherited with a 50-50 chance a parent will pass the gene mutation on with each pregnancy.

“Through my whole pregnancy, all the ultrasounds, everything were completely normal. It wasn’t until he was born that we noticed right away. We noticed his sunken eyes, and his fingers, his hands did not fully open,” said Kayla Clevenger, Grayson’s mother.     

People with Beals syndrome have permanently bent joints, Grayson uses a wheelchair with colorful lights. Although his Beals syndrome restricts his movement, it doesn’t restrict his mind.

Beals syndrome has no effect on cognitive ability. We met Grayson at his school it’s a special setting for kids, like Grayson, with complex medical conditions.

“It’s done wonders for Grayson, and I give the nurses all the credit because he has come so far. I mean, this is a kid that we don’t know when he would ever walk. He’s been hitting his milestones a lot lately,” Clevenger said.

Clevenger goes on to say they don’t know what Grayson’s prognosis will be but he’s exceeding expectations.

“I always get so emotional just because looking back, you can tell the difference and the progress that he has made since being born,” Clevenger said.
     
Grayson’s mom is a medical assistant, but says even more than her medical knowledge, it’s her mom instincts that have helped.

Clevenger also mentioned that you should always advocate for your child if you think something is off, see a specialist and starting therapies early can make all the difference.