Ryan’s Story: How Maynard Children’s Hospital helped him beat rare autoimmune disease

Updated: May. 31, 2021 at 9:14 PM EDT
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ROCKY MOUNT, N.C. (WITN) -It’s not uncommon for a child to come down with a fever. But a mother in Rocky Mount knew when her two-month-old son’s fever wouldn’t go away, there was something more to it.

Her instincts, unfortunately, were right. They ended up at Maynard Children’s Hospital in Greenville where doctors worked to save this precious child’s life.

Shannon Lee remembers the frightening condition her son Ryan was in. She says, “His liver and his spleen enlarged significantly. So his belly was super big.”

Just as terrifying for Shannon was the diagnosis for her son: The rare life-threatening autoimmune disease HLH, which stands for Hemophagocytic Lymphohistiocytosis.

Shannon says, “I was kind of confused, uh didn’t really know how he had developed it, didn’t know what would cause it. Later on, I came to find out it was genetics.”

And what it meant was that Ryan’s immune system was attacking itself.

Shannon says, “His antibodies they weren’t working. His white blood cells were so low he couldn’t really fight off any kind of infections.”

Ryan’s great-grandmother Perline Smith says it all started with a persistent fever and a trip to Nash General Hospital. He was then airlifted to Maynard Children’s Hospital.

Perline says the family feared the worst. “That he weren’t going to make it.”

Shannon says, “There’s been many times that the doctors didn’t think he was going to make it. There’s been many times he’s been in the ICU and I sometimes didn’t even think he would make it.”

Ryan’s treatment included several blood transfusions, medications, and a bone marrow transplant.

Perline says, “People were just praying for him. Prayer. I know prayer changes things. People prayed for him. Everybody prayed for him.”

Today Ryan is three and loves playing ball and with his truck. And his grandmother says he likes to talk.

Perline says, “Everybody come up and say hey, hey, hey and he says ‘hey grandma,’ I said what, he said ‘I speak to everybody.’ I said you sure do.”

Shannon describes her son as being, “Very energetic. He loves to play. He’s loving. He’s wild.”

Ryan still comes to the hospital every couple of months to the Pediatric Day Medical Center, also known as P-Day, to have his blood levels checked and to see if he needs an immune booster. It’s all part of the continuing great care that his family says they have received at Maynard Children’s Hospital.

Shannon says, “I love the treatment he received. They treated him very good. Very well.”

Ryan is still on a few medications. He still has a port in his chest for medications as well as a g-tube for nutrition but Shannon says doctors are talking about taking those out because he’s doing so well.

They’re all hopeful for the future and thankful to Maynard Children’s Hospital for their little miracle.

Perline says, “Everybody that went to see him they said this is a miracle baby here. This is a miracle child. And he is. He is.”

All this week we’ll continue to show you the great work being done at Maynard Children’s Hospital, and why your support is so critical.

We hope you’ll join us this Sunday, June 6th from 6:00 a.m. to 9:00 a.m. and then again from 7:00 p.m. until 11:00 p.m. for our CMN telethon and call in your pledge so miracles, just like Ryan’s, continue.

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