5-year-old boy awaiting heart transplant relocates from Kansas to Chicago

CHICAGO (WLS) -- Like other kids, 5-year-old John Francis Clark, zones in on his video games; sometimes he can be convinced to give mom a hug. But there's more than Mario drawings and a handmade Mother's Day card in his room: oxygen and IV tubes reveal the burden he carries.

"It was very difficult to hear that he would need a heart transplant now at the age of five," said his mom, Hemma Clark, from John Francis' room at Lurie Children's Hospital.

Hemma and her husband, John, hoped their youngest child would grow older before needing a transplant. But they have known since his birth that this would be necessary because of his congenital heart disease called Hypoplastic Left Heart Syndrome.

"He has a small left chamber, but it's so small that it can't function to supply all the blood to his body," explained Dr. Amy Lay, John Francis' cardiologist.

At home in Kansas, that condition deteriorated rapidly in recent months, finally forcing a medical flight for John Francis to Chicago. Now he waits -- but that could be days, weeks, even months. With the timeline unknown, John Francis' family has relocated from Wichita, Kan., to be with him. Dad, the two older siblings, and grandma all caravanned by train from Kansas City to Chicago Monday.

"Our other children are young," his mother said, adding, "We are a strongly bonded family and we believe in going through this together."

Despite this adversity, which Hemma Clark admits have brought "a lot of tears," John Francis' mother said the family's faith remains strong.

"I believe that God... God's grace will get us through this," she said.

Hemma Clark added that she hopes sharing her son's story will provide support for other families facing similar challenges; she also wants to raise awareness for the need to research congenital heart diseases.

Clark also has a message for the family that will make the unimaginable decision of donating their own beloved child's heart, choosing to give life in a moment of unfathomable loss.

She said she wants them to know "how grateful I am... for giving my son life," adding "I can't think of a more incredible and selfless gift."

Clark added that that generosity won't be wasted on her loving, energetic boy.

"He is sweet. He has a heart of gold," Clark said.

Now he's waiting for the right match.