“It was devastating,” Edmond boy diagnosed with rare condition

EDMOND, Okla. - Two-year-old Harrison Weber doesn’t talk clearly yet, but it’s clear he already knows his numbers while working on a puzzle where he fits the numbers into the corresponding spaces.

When the Edmond boy was just a few weeks old, he presented a true medical puzzle for his family.

“We did genetic tests before I was pregnant and they don’t even test it, it’s so rare,” said Zhesi Chen, Harrison’s mother.

She noticed unusual symptoms including a hump on his back and difficulty breathing.

Genetic testing revealed Hurler’s syndrome. It’s a rare condition where the body doesn’t produce a key enzyme.

"And, so, because he doesn't have that enzyme, some waste products accumulate and they end up being toxic to a variety of different organs including heart, lungs, liver and brain most importantly," said Dr. David Crawford with Jimmy Everest Center for Cancer.

“It was devastating because we never heard of it," Zhesi said.

Harrison found help and healing at Jimmy Everest Center for Cancer, where Crawford helped search for a needle in a haystack.

Harrison needed a stem cell transplant match that would allow his body to create that missing, life-saving enzyme. The donor would need to match his unique biracial genetic makeup.

Thankfully, that rare match was found in a donor from Taiwan back in August of 2016. Those stem cells were flown half-way around the globe and transplanted into Harrison’s body in Oklahoma City.

 “I think he’s essentially cured from his disease," Crawford said.

Harrison’s short stature and distinct facial features will carry the signature of Hurler's syndrome, but he's a bright boy and his family can again dream big for him.

"He is a bubbly, vivacious kid that we just love to see,” Crawford said with a smile. “He's fantastic and bright, and I think he's got a great future."

His mom agrees.

“He's a fighter, a strong fighter," she said.

Harrison is leading a therapy dog around the Jimmy Everest Clinic by a leash. He’s smiling and is relaxed at the clinic, which is, in some ways, his home away from home. It’s a place he’s always known, that gave him his own lease on life.

If you'd like to help kids like Harrison fight cancer, consider donating to JECFriends.org.

'Kids with Courage' is sponsored by the Jimmy Everest Center.