Mom urges Mo. lawmakers to expand newborn screening and include SCID testing

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KANSAS CITY, Mo. -- A little boy has spent most of his year of life at Children’s Mercy Hospital fighting for his life. Now, his parents are taking the fight to Jefferson City.

For a short time, Megan Wheeler and John Hedden had a nearly perfect life.

“We got to be a normal family and that was the best. That four months was awesome. I wish we could go back to that,” said Megan with a laugh.

This little family has been fighting for the past eight months to keep their son alive. Baby Johnny was born without an immune system, and his condition keeps getting worse.

“He has chronic heart failure and the medicine he’s on right now is keeping his heart going. We don’t know how long we have with him,” she said.

Doctors at Children’s Mercy diagnosed Johnny with a rare form of Severe Combined Immunodeficiency or SCID. It’s a nightmare Megan is not ready to accept.

“No parent should have to lose their child. I’m just hoping a miracle will happen,” said Megan.

Megan says this heartache could’ve been prevented if this disease was caught earlier. She shared Baby Johnny’s story with lawmakers in hopes of changing a bill. House Bill 1315 will expand newborn screening to include SCID.

“I’m hoping that he won’t hate me whenever he does pass because of everything we put him through,” she said of her son. “That’s your life and you’re going to do everything you can for them.”

Megan is praying for a miracle to save her son who has yet to reach his first birthday. But she says it’s not too late for others.