Springfield child battles rare condition, affects one in 100 thousand

Jaxon Menda is only 4-years-old, but he’s been through more surgeries than most people will see in a lifetime.

Menda was diagnosed a month after this first birthday with a rare, genetic condition called MPS I, or Hurler Syndrome that affects about one in 100 thousand newborns.

To put it simply — Menda doesn’t have an enzyme in his body needed to break down sugar.

His mother, Lindsey Menda said without the enzyme, the sugar builds up around his organs and slowly damages them.

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She said she and Jaxon’s father, Justin Menda, didn’t know they were carriers of the MPS 1 because no one else in their families has the condition.

MPS I is caused by a recessive gene. There is a one in four chance with every pregnancy that the child will inherit the defective gene from each carrier parent and will be affected with the disease, according to information on the National MPS Society’s website.

“Our hearts were just shattered,” Lindsey Menda said.

The average life expectancy for someone with the condition is between five and 10 years old.

But at 18-months-old, Menda received a life-changing bone marrow transplant from an unknown donor — luckily enough, on Saint Patrick’s Day.

“We know (the donor) was a male,” Lindsey Menda said. “We don’t know where he’s from but we do know it was a perfect match.”

Lindsey Menda said she basically lived in Cincinnati Children’s Hospital for six months after the transplant.

“It’s tough seeing your child in that state, but you’ll do whatever you have to do for your child,” she said.

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Although not a cure — the transplant could extend Menda’s life into his 20s. Every year, Menda celebrates two birthdays — the date of his birth and the date of his transplant.

“We’ll get him a little present just so he knows it’s his special day,” Lindsey Menda said. “It’s a huge milestone every year.”

On May 15, Clark Early Learning Center in Springfield celebrated Menda on MPS Awareness Day with a purple balloon launch and parade. Students marched with purple signs that said ‘We love Jaxon.’

Principal Deb Accurso credits the recognition of MPS Awareness Day at Clark to Emily Domanek, one of the center’s preschool teachers.

“Until he came here, none of us had ever heard of MPS,” Accurso said. “We just thought that we’d want to do something so people would know about this.”

She said Menda has done well at Clark for the two years he’s been a student.

“He’s just blown us away on what he can do,” Accurso said. “He’s really got the attitude of ‘I’m just like everybody else.’”

Jaxon’s mother said she’s appreciative that the school would go above and beyond for her son.

“He’s made us realize how strong a little child can be,” Lindsey Menda said. “He doesn’t really focus too much on the painful part of it. He seems to find a way to enjoy life with whatever is going on.”

Since his diagnosis, Menda has undergone at least 10 surgeries and his mother said he will need to have hip and back surgeries within the next couple years.

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