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New Jersey girl diagnosed with unheard of medical condition

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RUTHERFORD, N.J. — For a year and a half we’ve been telling the story of Maya-Rose Dwek and her dad Alex.

They live in Rutherford, N.J. Maya is 8 1/2 now.  She can’t talk and can’t walk. Alex is raising her alone since his wife left. His divorce recently came through. And all this time he’s been wondering what to do for his little girl.

"She’s always happy. But I’m worried about her future,” Alex told me when we spoke the other day.  “I don’t know what I’m gonna do now as a father. I’m gonna fight for her. I’m never gonna give up!”

Alex means the name of a neurosurgeon who would work with his insurance and his neurologist.

It’s formally called “autosomal dominant mental retardation 19.”  What it means is dystonia. Her brain can’t properly communicate with her muscles because of a unique genetic mutation.

That’s why she can’t speak or walk.

Howard: “She is the only human that has this?”

Alex: “They’ve never found anyone on this earth with this particular disease.”

Alex trusts his neurologist who says there’s one best treatment option for Maya.  It’s called deep brain stimulation. Electrodes are implanted in the frontal lobes of the brain.  Electronic impulses would artificially communicate with Maya’s muscles. In the best case it will permit her to talk and walk. But no one can foresee how much. It’s Alex’s only hope but still terrifying.

“Who does this with their child? Yeah, let’s go. Let’s cut open the side of her head and put electrodes in there and are you gambling? Is it gonna work?  Is it not gonna work? It is a risk”

Now Alex is hoping to find a neurosurgeon who will work with his insurance and his neurologist. So far he’s been getting the insurance run around.  But Alex is committed to helping his daughter, the most precious thing in his life.

If you have any experience with deep brain stimulation or any other information that may help, email me at Howardshelpers@pix11.com. We’ll pass along relevant information that may help Maya-Rose.