Missouri infant with rare disease in dire need of transplant

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JOPLIN, Mo. (KSN) — An 18-day-old baby from Oronogo, born with a rare disease, is fighting for his life.

“I feel helpless, I can’t help my own daughter and I can’t help my own grand-baby,” said Janet Cusick, Grandmother.

Every time her phone rings, Janet Cusick panics.

“It’s not like, oh my daughter’s calling me, what is she doing today? It’s my daughter’s calling me she’s at the hospital. Is something wrong? Is he sick? Did he catch something?”

Cusick’s grandson Kavon Love is only 18 days old and is fighting for his life.

Right now, Kavon is being treated at Children’s Mercy in Kansas City.

“About a week old they had called and they said hey, the initial SCID test came back abnormal.”

“SCID or severe combined immune deficiency is a rare but serious disease,” said Rahul Oberoi, Neonatal ICU Physician, Freeman Health System.

When the body is unable to fight infection, especially in babies, they are at risk for serious complications and sometimes, even death.

“If he catches a cold it’ll be fatal. He can’t fight it,” said Cusick.

The only way to get the immune system up and running is to get a bone marrow transplant.

“Basically where you take out a child’s immune system and replace it with that ideally of a sibling or a relative,” said Oberoi.

If a relative isn’t a match, the family will look to a national registry for a donor.

“I do know there are specific genetic markers that the genetic specialist and the infectious disease specialist will be looking at to see if somebody is match or not. This is as specific as it gets.”

Until they find that match Janet Cusick continues to wait by the phone.

“I try not to do that cause phones are bad they’re bad for your relationships and stuff, but if she calls it could be the bad call,” said Cusick.

A benefit for Kavon is happening tomorrow, Tuesday, January 21st, at Domino’s Pizza locations at 2316 Maiden Lane and 1714 S Rangeline Road in Joplin. 25% of sales will go to help the family with medical expenses.

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