Charming 5-year-old fighting tumors caused by genetic condition

Kids with Courage

SHAWNEE, Okla. (KFOR) – Madisyn Castaneda rarely meets a stranger. 

This charming 5-year-old girl from Shawnee has been going almost weekly for a clinic visit at Jimmy Everest Cancer Center, where she chats easily with her extended medical family. 

It was last year when doctors discovered an inherited condition that threatened her eyesight.

Her mother, Amber Casteneda, has a genetic condition called neurofibromatosis, or NF, that she passed on to Madisyn. 

“It’s something you deal with your whole life. There is no cure for it,”  said Daniel, Madisyn’s dad.

At first, NF had little effect on Madisyn. It’s a condition that can spawn nerves on tumors, both on the surface of your skin, or deep inside your body.

Madisyn’s tumors are internal, and although they are benign, that doesn’t mean they are not dangerous.

“Benign brain tumors can do a lot of damage because they are in high dollar real estate,” says pediatric oncologist Dr Renee McNall-Knapp.

She says weekly chemotherapy is effectively putting the reins on tumor growth for Madisyn.

In fact, the tumors in her optic nerves have shrunk. 

“We also do MRI’s to look at size of brain tumors and make sure they’re not growing, and her’s has been stable since we started doing therapy,” adds Dr. McNall-Knapp. 

Fortunately for Madisyn, a little chemo is not keeping her down. She plays and interacts like any child her age.

“She takes it like a champ.  She never complains about the therapy at all. She likes coming here and loves the staff here,” her dad says.

Dr. McNall-Knapp agrees with a laugh, saying, “She is 99 percent on the cute meter. She is adorable, sweet and feisty. A little booger too.”

Madisyn came up with an idea to sell bracelets and t-shirts to help with her medical treatment.

When her treatment wraps up in a few weeks, she plans to use that money to buy toys for other young patients.

She is generous, courageous, and an inspiration to her family. 

If you’d like to help children like Madisyn fight cancer, consider donating to JECKids.org. 

Kids with Courage is sponsored by Friends of the Jimmy Everest Center.

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