Mother, children fight rare brain disease

- A rare brain disease is not only affecting a Chandler woman, but her two children as well.

The disease causes tumors that can result in hearing loss, paralysis, and if left untreated, death.

There is no cure for the disease, which is called Neurofibromatosis Type 2.

"I spent my entire life with this disease, watching my mom and my brother, who is deceased, go through this," said Leslie Nava. She was diagnosed with the illness at the age of 18. She thought her two young children are not affected by it.

That all changed, five years ago.

"When we received the call that our son had tumors, it was like the whole world went dark," said Nava. "I mean, there's no description for a parent that is going through this. There is nothing to really describe the pain that you feel when your child is diagnosed with an incurable disease."

Dr. Randall Porter said the disease is extremely rare, but there are ways to live with it.

"The real goal is to preserve function as long as we can, and intervene before they lose function," said Dr. Porter. "On the other hand, when you intervene early, when you put somebody under the knife, you're actually putting them at risk for losing that function that you're trying to preserve."

Nava is doing her part to help preserve her health, as well as her children's. She fights the disease by working out with her son, six days a week.


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