Ferris' Fighters

This year has been a crazy one with Ferris. He has yet again proven to be a determined little boy, that will not let NF hold him back. Once Ferris turned one we noticed NF showing in him more. He was hardly crawling, and did not crawl on his knees until he was about 13-14 months old. This did not stop our little man from getting where he wanted. During his 15 month appointment, Ferris' doctor voiced concern that Ferris has not growing taller, he had not grown even 1/2" since his 12 month appointment. We decided to wait for any testing to see if he would go through a growth spurt at his 18 month appointment. We went to our regularly scheduled visit at Children's to meet with Ferris' genetics doctor. She also voiced the same concern, and asked us to get labs done to see if he was missing a growth hormone. Labs did come back that he shows a hormone deficiency, and we will be meeting with an endocrinologist mid April. 

Ferris was referred to the "Help Me Grow" program as Ferris was not walking at 18 months, and continued to fall behind in his gross motor skill. This program has proven to be a great blessing. After a week of getting the approval of PT, Ferris walked to me from across the room. His PT teacher was surprised when she showed up to daycare for PT and he walked to her. 

Jason, Ferris and I are so blessed to have such amazing family and friends that have been so encouraging. We ask that you consider donating to support Ferris with his journey. We will be participating in the Step Up for NF walk this year in June. 

What is Neurofibromatosis (NF)?

NF is a genetic disorder of the nervous system which causes tumors to form on the nerves anywhere in the body at any time. This progressive disorder affects all races, all ethnic groups and both sexes equally. NF is one of the most common genetic disorders in the United States (one in every 2,500 to 3,000 births). Neurofibromatosis affects more than 100,000 Americans; this makes NF more prevalent than Cystic Fibrosis, hereditary Muscular Dystrophy, Huntington’s Disease and Tay Sachs combined.

NF has three genetically distinct forms: NF-1, NF-2 and Schwannomatosis. They are caused by different genes and chromosomes. The effects of NF are unpredictable and have varying manifestations and degrees of severity. There is no known cure for any form of NF, although the genes for both NF-1 and NF-2 have been identified.