I will be stripping to my skivvies and running around in the frigid temps this February all in an effort to raise funds so kids like Ryan can grow up happy and healthy.
My son Ryan was diagnosed with NF1 (Neurofibromatosis type 1) in July 2012 at 7 months old. NF causes tumors to grow on nerves throughout the body and can lead to blindness, bone abnormalities, cancer, deafness, disfigurement, learning disabilities and excruciating and disabling pain. In Ryan’s case he has 10 tumors total. He has very large complex tumor called a Plexiform Neurofibroma growing on the left side of his head/neck/shoulder area. On the outside it looks like a large birthmark. On the inside it’s wrapped around nerves and pushes on his carotid artery. The tumor blocks 70% of his nose and 60% of his throat, suffers from bad asthma and suffers from hearing loss in his left ear. Ryan also has Laryngomalacia (a congenital softening of the tissues of the larynx above the vocal cords. The laryngeal structure is malformed and floppy, causing the tissues to fall over the airway opening and partially block it.) November 2012 at just 11 months old he had a supraglottoplasty, which is a surgical procedure to alter malformed structures of the upper larynx to allow him to breathe more easily. He has had 13 MRI’s in his short lifetime and will continue to endure them every 4-6 months The tumor had such a rapid growth that we decided in November of 2013 to put Ryan into a clinical trial. He went through weekly chemo injections in hopes of shrinking the tumor. So far the tumor has had little growth but for the most part remained stable. Despite all of this, Ryan is an amazing, happy, outgoing, fun loving but most of all a brave little 5 year old boy! I cannot control what may happen to him in the future with this disease but I can control raising awareness and money to find a cure for him and all the others! He may have NF but I will not allow NF to have him!
NO CHILD SHOULD HAVE TO GO THROUGH THIS and you can help.
Donate or join our team of undie clad runners. Every dollar raised will provide critical funding for the research that will ultimately enable a cure.
Together, we can be the difference in the lives of children like Ryan and help #endNF.