This is my son Crew and he has a genetic disorder called Neurofibromatosis 1 (NF1). NF has greatly impacted his life. At age 2.5 years old Crew has had at least 5 MRIs under sedation, he has 8 different doctors or specialists, too many appointments to count, he has tumors in his mouth, cheek, near his brain stem and neck. The tumors have caused his tongue to be asymmetrical to the extent of the center of his tongue being on the left side. His speech is being greatly affected and has started Speech Therapy. He often accidentally bites his tongue and gets frustrated when others can not understand him. The tumors have caused his parotid gland in his cheek to be blocked and will be needing Botox injections under sedation. Due to the tumor on the trigeminal nerve, every time when he chews food red flushing occurs on his right cheek that sometimes goes into his ear, eyelid and hairline. Sometimes when his skin flushes his right eye will water. Crew has been taking a chemotherapy medication since 11/29/16. Sometimes the meds make his stomach feel upset or gives him headaches.
Crew has been to the doctor so often that even as a toddler he often tells the professionals what to do and when. (i.e. Check this ear, that ear, eyes, pulls up shirt for them to hear his heart and back)
We have an amazing support group that has banded together to put together and support fundraising for a lifelong medical fund for Crew. This includes fundraisers and awareness basketball games at local high schools, Facebook direct sales fundraising, selling homemade holiday arrangements, selling tshirts, putting together a huge benefit at a local elementary school, plus more. We even just recently interviewed with Fox 17 about Crew, his journey with NF1 and his fundraisers. We hope to bring
awareness to this disorder, and help provide strength and hope to others on similar paths.
If you would like to donate to Crew¹s Lifelong Medical Fund please visit:
If you would like to contribute a donated item, gift certificate or gift
cards for our silent auction please email me at firstname.lastname@example.org
For more information on Crew and his journey please follow his Facebook
page: His Battle Is Our Battle
Fox 17 News story about Crew:
Toddler fights NF1, community rallies during basketball games
Thank you so much for your time in reading this and for your prayers.