Maverick - A Face of NF - Neurofibromatosis Midwest

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Neurofibromatosis Midwest

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“Mom found NF Midwest, she calls them our life ring and for good reason, they saved us in more ways than they or anyone else could imagine. We were no longer alone. They sent us information, talked to us gave us a breath when everyone else seemed to have taken it away. Trust me when I say my NF is much easier with them in my corner. ”
-Myshell
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“..we reminded ourselves to not get overwhelmed by the info and just to take it all in stride as much as we can. I think when it’s all new to you, it all sounds so scary. Which is why it was so nice to meet other families with happy kids and adults with NF. ”
-Sue
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“I received both of your packets in the mail yesterday and I wanted to say THANK YOU! The NF packet provided me with so much information I cannot thank you enough. When we got his diagnosis in November we had never even heard of NF so this has all been a bit of a whirlwind for us. Thank you for providing me with the tools to pass along to his teacher and my family! ”
-Jessica
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neurofibromatosis, nf, nf1, faces of nf, neurofibroma

Maverick – A Face of NF

Posted By Andrea Miller | On May 12th, 2019

Maverick is the first in his family to be diagnosed with NF1. He started showing symptoms at 2 months old. He has multiple café au lait spots, a larger head, he had bowed legs as a baby, and he has low muscle tone that requires physical therapy, occupational therapy, and speech therapy. He has issues with anxiety and he is in special education classes because of learning disabilities. He has a plexiform neurofibroma tumor on his ribcage, and a neurofibroma on his back. When he gets sick it takes a while for him to get better. Despite his struggles, he is a happy, loving, and imaginative 4 year old boy.

– Kara (Mom)