Illinois community supporting kid with life-threatening illness

COAL VALLEY, Ill. — Just days after Mary Matheson gave birth to Liam, doctors diagnosed him with a life-threatening illness.

“He’s my entire world,” she said. “When he was five days old, we got a call from the pediatrician’s office that he was diagnosed with a rare auto-immune deficiency called SKID, or as other people would know it, bubble boy disease, which means he was born without a functioning immune system.”

Mary found help for Liam at Lurie Children’s in Chicago for a bone marrow transplant and continued treatments.

Driving back and forth from their home in the Quad Cities for most of the last seven years.

He recently started care in Iowa City, Iowa. And now there’s another setback.

Lymphemeda.

“We noticed his groin and leg swelling, triple the size of his leg, completely red and inflamed,” Mary said. “We rushed him to the hospital. They came to the conclusion that he had cellulitis and there was a strep and staph infection running in his bloodstream.”

Infections that even a healthy immune system would be challenged by, for Liam, were life-threatening.

The lymphedema meant the build-up of toxins.

To fix it, Liam needed delicate surgery to treat it.

One doctor at the Cleveland Clinic said he was confident he could do it, even with Liam’s complicated medical history.

But then there was another complication.

Sarah Apodacz, Mary’s friend, was the first to know.

“She called me in tears,” Sarah said. “She’s sobbing because she’s saying ‘insurance won’t pay for it, I don’t know what to do.’ He keeps getting these infections, he winds up in the ICU. Every eight weeks this year, he’s been in the ICU.”

An initial story on Quad City News got one thing done: Illinois Medicaid relented, agreeing to pay for the surgery at the Cleveland Clinic.

But the pre and post-op hospital bills, travel, and lengthy rehab for Liam are still Mary’s responsibility.

“I cannot sit there and watch this kid go through this,” Sarah said.

Next month, a spaghetti dinner fundraiser in their hometown of Coal Valley hopes to raise a few thousand. And Liam Strong shirts are also helping the family.

And a GoFundMe has already raised more than $40,000, about half of what Mary already owes.

“I would do anything for him,” Apodacz said. “He’s a phenomenal child.”

On Jan. 25, Liam will go in for that complicated 12-hour surgery.

“This surgery should save his life,” Mary said. “That’s what it’s going to do.”

For Mary, it’s another battle for her 8-year-old, one she hopes will mean a healthier future to thrive and be a boy.”

“He’s the bravest kid I’ve ever gotten to know,” Mary said. “No kid should have to go through what he’s been going through. He deserves the world. The entire world.”