Local 8 Now - Content - News

Athlete fights rare disease with a good attitude

By  | 

ROANOKE, Va. (WDBJ) -- Fourteen-year-old Emma Synder loves soccer, volleyball and basketball, but a rare disease is keeping her from playing. It took doctors a year to figure out what was causing Emma's pain.

Emma looks like your typical teen, an athlete at heart, but it's what you can't see that's keeping her off the court.

"I have to limit my sports. It's hard doing that, but even if I'm sitting on the sideline, I can still be encouraging to my teammates, and I feel like this is the plan that God has for me, and I'm going to do my best to get through it," Emma said.

It's with her can-do attitude and brave face that she battles a rare disease.

"It's what they call chronic recurrent multifocal osteomyelitis, or CRMO for short," Emma’s mom, Vicky Synder explained.

It affects one in a million, mostly kids and teens. It causes pain, deep inside the bone. For a girl who loves contact sports, it can be dangerous.

"Being that it's in her spine, vertebral collapses and fractures are common," Vicky Synder said.

Emma and her mom have been traveling to Duke Medical Center for special drug infusions. The drug is used for osteoporosis, but they're hoping these treatments will help with pain management, and in theory, will stabilize her spine.

"She's kept a good attitude, and she does really well with just keeping positive," Emma’s best friend, Abi Britts said.

And Emma stays busy! She’s homeschooled, which her mom said is a blessing right now. Emma enjoys some of her favorite classes like sign language and history, and of course, spending time with her friends, all while she patiently waits to get clearance to play again.

"You want to just bubble wrap her and say, 'You're not getting back on that field or back on that court,' but I know that's her passion. Once we get the clearance from the doctors, I'm just going to put a blindfold on at those games and let her play," Vicky Synder said.

Play through the pain, with the hope of raising awareness about a rare disease that may have sidelined Emma from sports, but can't sideline her smile.

“We never know what people are going through on the inside, and for her it's inside and deep in her bones and she struggles a lot, but she's very determined," Vicky Synder said.

Emma had another infusion last week. She and her doctors at Duke are leaning on research and education from Seattle Children's CRMO Fund.

Follow this link for more information: https://giveto.seattlechildrens.org/CRMOfund.

Read the original version of this article at wdbj7.com.