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Hurler Syndrome Is No Hurdle Md. 5th Grader Nolan Ramsey Can't Overcome

PHOENIX, Md. (WJZ)—He's only 11 years old, but he's already endured 20 surgeries. Nolan Ramsey is a fifth grader who suffers from an enzyme disorder called MPS1.

Ron Matz has more on a courageous young man and the help he's getting from some very special friends at Jacksonville Elementary School.

Nolan Ramsey has a lot of friends. They wore purple Wednesday. The fifth grader at Jacksonville Elementary School was 11 months old when he was diagnosed with MPS1.

"Nolan was born without an enzyme. Without that enzyme sugars collect in his body and they affect all the different organs, eventually all the different organs would start to shut down," his mom, Nancy Ramsey, explained.

"Nolan was my third child," she said. "We have two other children that are perfectly healthy. Nolan was diagnosed when he was 11 months old. He was a little slower to progress. He was diagnosed with MPS1 called Hurler Syndrome."

Recently Nolan underwent cervical spine surgery, but his smile is always there.

"He comes to school with a smile. Nothing bothers this boy. Everybody is his friend, and he's awesome," said Jill Allen, Nolan's teacher.

His mom agrees.

"He has a smile on his face most of the time," she said. "He wore a massive halo on his head for three months yet he giggled and smiled and had fun the whole time. He never complained."

He has awesome friends too, the charity bakers, who have raised $250 at a bake sale.

"We just thought we could bake for charity and then we thought of Nolan. It makes me feel proud and great that I'm helping other people," said Morgan Orazi, fifth grader.

"I think we should really give back to him. He's given us so much. He's always so happy. He's just a great kid," said Hannah Bellinger, fifth grader.

Nolan just returned to class after three months of home and hospital care.

"We spent six months in North Carolina. Duke University did a cord blood transplant. Now Nolan has the enzyme that he was missing with the MPS," his mom explained. "Nolan just finished his last surgery. He had cervical spine surgery at Johns Hopkins."

Nolan is scheduled for another surgery in July.

"He'll always have these things to fight. They're searching for a cure for MPS. They come up with new things all the time, but everything they have now is a band aid, not a cure," Nancy Ramsey said.

He loves Instagram, and his friends love Nolan, a picture of courage.

"He's a hero. He gives me courage every day."I missed Nolan terribly. He was out for three months with surgery and just returned back," Allen said.

Wells Fargo Bank matched the $250 donation from the charity bakers at Jacksonville Elementary.

Click here to learn more about Nolan's story and here to learn more about MPS. The Charity Bakers have a blog and you can also click here to watch a Youtube video.

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