Children's Hospital

CBS 4 Kids: Ryan's Battle With Rare Disease

BOSTON (CBS4) ― Ryan's story is a story of hope that started with a discovery at Children's Hospital Boston. It's the story of a baby's grave diagnosis and the experimental treatment that saved him.

He's sweet. He's resilient, and by virtue of his incredibly rare condition, Ryan Brewitt is helping Children's Hospital come up with groundbreaking treatment that is saving his life and the lives of others.

Ryan is a happy, energetic little boy. Yet he is anything but normal.

Ryan's mother, Denise, said she first knew there was something wrong when Ryan was born with a dark mark on his nose. Then she noticed blood when he spit up. She and her husband immediately took their third child to Children's Hospital.

"When we saw that Ryan had such an unusual consolation of problems, tumors in his lungs, his intestines, his skin, we knew that we were dealing with something extraordinarily rare," says Ryan's doctor, Dr. Steven Fishman.

Ryan is one of ten people in the world diagnosed with a complex disease actually named by the doctors at Children's Hospital Boston. It's called Cutaneous Angio-Mitosis with ThromboCytopenia.

His physicians knew Ryan's life was in jeopardy. He had hundreds of tumors in his lungs.

"They looked so horrible," says Denise. "Something that you would see in someone that had been a smoker for 30 years."

"He was bleeding from them. And when you bleed in your lungs, it's essentially as if you're drowning," explains Dr. Fishman. "He was near drowning in his own blood."

Undaunted, the doctors treated Ryan with an experimental combination of steroids, thalidomide and chemotherapy. And the results were astonishing.

"In a more recent cat scan of Ryan's lungs, demonstrates that the tumors are gone," says Dr. Fishman.

There is no cure yet. If the lesions reappear, the treatment will be repeated.

In the meantime, the doctors at Children's Boston watch this upbeat young patient very closely.

"He is a child that would be an inspiration for any physician," says Dr. Giannoula Klement.

Ryan had help in his recovery from a dog named Amos. He's in the "Pawprints" program at Children's. At one point when Ryan had braces on his legs, the only thing that got him up and walking was playing with Amos.

We'll be sharing inspirational stories about kids at Children's year round, as part of our CBS 4 Kids partnership with the hospital.

If you'd like to support Children's Hospital Boston through the CBS 4 Kids campaign, you can donate to Children's Hospital online.

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