Brooklyn family helps four-year-old son fight rare disease

Michigan

BROOKLYN, Mich. (WLNS)—-Full of life and full of love. That’s who four year-old Jaxon Meschke is.

“All my friends! I love mom. I love dad and baby brother,” said four-year old Jaxon.

But it’s his perseverance that stands out to his parents Brian and Chelsea Meschke most.

“He really has a strength that we don’t know where it comes from, but we are sure glad he has it, “said Jaxon’s mom, Chelsea Meschke .

It’s a strength he needs every day. When Jaxon was six months old doctors diagnosed him with cystinosis, an extremely rare condition that doesn’t allow the body to dump out amino acids that causes a build-up inside the body.

“The problem is this exists on all his major organs, so over time without dumping or getting rid of that amino acid he’s susceptible to hardening and it could eventually shut down organs,” said Jaxon’s dad, Brian Meschke .

He’s one of just eight people to have it in Michigan, but the family has been working with several teams of doctors at the University of Michigan who help Jaxon every step of the way.

“The genetics team is like one of the leading people in the world when it comes to cystinosis, so we really just got kind of lucky that we are here and that he was at U of M.”

Right now, while progress is being made there is no cure for the disease, but there are ways to help his body fight it. His parents help to treat him by giving him special medication throughout the day. 

“One medication is twenty pills a day, so for a four year old that’s a lot.”
But medication also takes a toll.

“There’s a lot of vomiting with cystinosis patients. It’s really just a lot of the medicine on top of the medicine and some of them can be a bit aggressive.”

But that doesn’t slow him down too much. If you meet him, it won’t take long for him to show you his new drums or his favorite heroes Spider-Man and batman, and for mom and dad their hero is him who shows them his superpowers every day. 

“You feel proud. I think he’s well equipped. He’s going to have to fight for a long time with this disease and I think he’s up for it. I think he’s going to do a great job.”

Jaxon will also soon have another friend to play with as the family is expecting another boy in September. They also are working to raise money for further research to hopefully soon find a cure.

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