This Brave 4-Year-Old Boy Refuses to Allow Cystinosis to Win


WLNS Brooklyn Michigan is sharing news about Jaxon Meschke, a four-year-old boy with a rare disease called cystinosis.

Jaxon’s body has been fighting the disease since he was six months old. His parents describe Jaxon as being very loving. He told WLNS how much he loves his dad, his mom, his baby brother, and all his friends. Jaxon will soon have a new baby brother to love.

About Cystinosis

In cases of cystinosis, amino acids are not eliminated as they would be in healthy people. Therefore, the amino acids accumulate inside the body.

Jaxon’s father, Brian Meschke, explained that this accumulation would harden in the body if it cannot be eliminated. It would shut down every organ in his son’s body.

There are only eight people with cystinosis in Michigan. Jaxon’s father said they are very lucky that Jaxon is being treated by several teams of doctors including a genetics team at the University of Michigan. Coincidentally, The University has the reputation of being one of the world leaders in treating cystinosis.

No Cure for Cystinosis Patients

Thus far there is no cure for the disease, but Jaxon is fighting his disorder by taking medication that requires ingesting twenty pills each day. This is a lot for anyone, much less a small four-year-old boy.

Vomiting is one of the adverse effects experienced by cystinosis patients and adding twenty pills a day presents a challenge for Jaxon and his parents.

Jaxon’s Perseverance

Jaxon’s parents are grateful for his strength and perseverance. They are amazed at the way he bounces back and they are so grateful that he has this store of energy.

If a visitor did not know about Jaxon’s diagnosis, they would see a normal little boy playing with his beloved drums and his heroes Batman and Spiderman.

His parents hope that Jaxon’s strength will continue to help him cope with the disease. Both his parents are committed to raising money for research to assist with finding a cure.


Rose Duesterwald

Rose Duesterwald

Rose became acquainted with Patient Worthy after her husband was diagnosed with Acute Myeloid Leukemia four years ago. He was treated with a methylating agent While he was being treated with a hypomethylating agent, Rose researched investigational drugs being developed to treat relapsed/refractory AML.

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