Tuesday, May 6, 2014

NF Awareness: Meet Brian!

Hey there. Here's another little NF warrior I'd like you to meet. His name is Brian!

From Brian's Mom: Back in 2011 we went for a normal routine check up with his pediatrician. She noticed that he had a bunch of CAL spots all over his body & proceeded to tell me that she thinks that he has Neurofibromatosis. She only knew of this because she had 3 other patients with this. She suggested that we see a neurologist at The Cleveland Clinic. From that point on we went on to see a ophthalmologist & genetics. After we saw our doctor in genetics it was clear that Brian had a spontaneous mutation of mosaic NF1 along with other deletions around the NF1 gene in which we are going on the 6th to talk to genetics about. Even though his NF isn't severe like others he does have some speech problems that he has seen a speech therapist for at his preschool. Going into KG is going to make me nervous knowing that learning can be a challenge at times, but I do believe he will do GREAT!!! Brian is a VERY outgoing 5 year old boy that is also very inquisitive. He loves to help as well as working out with mom & dad. He loves playing outside & bothering his sister. He has a big heart and he's very loving. NF doesn't define him or our family. It's a challenge that we face on a day to day basis, but it won't hold any of us back."

*Brian's story posted with permission of his mother, Amanda*