Friends organize benefit to support boy, 3, with rare disease

Family day, motorcycle ride set for Saturday

INDIANAPOLIS - Friends and family have organized a benefit for a 3-year-old from Indianapolis with an extremely rare disease that has turned his family’s world upside down.

Just a couple of months ago, Liam Sprague was an active 3-year-old boy, who showed common symptoms of allergies and asthma.

Doctors were treating Liam for those common symptoms, when they discovered he had something worse. He was first diagnosed with Restrictive Cardiomyopathy, and then Castleman Disease.

"It's very rare. There's only 10 documented pediatric cases of it, and there are no cases of it that involve the heart," Donyelle Lytle, benefit organizer, said.

Sprague’s condition became severe quickly and he went in for a sedated MRI on June 20, and after the MRI, he coded and doctors performed CPR on him for two hours, family friends said.

Sprague was placed in a medically induced coma for six weeks at Cincinnati Children's Hospital Medical Center, where he is now undergoing chemotherapy for Castleman Disease -- which is not a cancer, but acts like Lymphoma. 

His parents, Carolynn and Rich, haven't left his side.

"It's life altering. I mean, to go from a perfectly healthy 3-and-a-half-year-old boy that you never imagined had such a sick heart, to a child that's lying in a hospital on life support and needs a heart transplant. I don't know how you put that into words," Lytle said.

Friends and family have organized a benefit and motorcycle ride for the weekend for the Spragues, who are now expecting their second child, a baby girl, in January.

They said the outpouring of support has been tremendous.

"I think it hits home for a lot of people. You go home at night and you look at your little man, your little girl, and you realize that could be you just as easily as Carolynn and Rich. Maybe make you hold your kids a little tighter," organizer Gareth Bailey said.

Liam has to have the Castleman Disease under control before he's eligible to get a new heart, and he has to have a new heart before he is allowed to go home.

The Love for Liam Family Fun Day & Motorcycle Benefit Ride will take place Saturday from 11 a.m. until 2 p.m. at the Southport Masonic Lodge at 5678 South East Street. There will be activities for kids, raffles and a silent auction.

Follow Tanya Spencer on Twitter: @tanyaspencer6 | Facebook: Tanya Spencer

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