On March 19, 2006, we were blessed with the addition of Isobelle into our family. Shortly after her birth, we began to notice brown patches on her skin. These cafe au lait spots were the first sign of a much larger problem.

When Isobelle failed to hit her milestones, we were referred to a neurologist. After hours of waiting to see the doctor, she informed us that our daughter had a rare condition, not Neurofibromatosis, and would be dead by the time she was three. She then ordered a MRI to confirm her diagnosis. On July 2, 2007, Izzy underwent her first of 12 MRIs, so far. Fortunately, the neurologist was wrong. An optic glioma (tumor on the optic nerve) was detected and then a diagnosis of Neurofibromatosis (NF) type 1 was confirmed.

Since that day, Isobelle has developed many other signs of NF: axillary freckling, lisch nodules (tumors of the iris), hypotonia, headaches, and gross motor delays.

In the beginning of 2009, her eye doctor identified some optic palour of her left optic nerve. Although the optic glioma was not growing rapidly, this was evidence that it was beginning to damage her vision. After a few more consultations, I recieved a call that would change how we live our lives; Izzy needed to start chemotherapy.

On March 18th, 2009,the day before her 3rd birthday, Isobelle had surgery to place a port in her chest. Chemo was started that evening. Hours after she recieved her first round of chemo drugs, her little body began attacking her immune system. The neutrophils, her body's indication of her ability to fight an infection, were too low. She has since recieved a secondary diagnosis of chronic neutropenia. The good news, after being off chemotherapy for a few months her body is finally producing enough neutrophils to put an end to the multiple shots we gave her each week to help her body stay strong.

Unfortunately we now have 2 new tumors to watch; one on her brainstem and a plexiform tumor on her face. Some days it feels like we will never have a normal life. I want to complain about ear infections...We have tried to keep life normal, but normal is hard when you spend hours in a car to get to doctor's appointments and therapy each week.

Help us find a cure for Neurofibromatosis by supporting us as we run in our very own community to spread awareness of this complicated and devastating disorder. Learn more at CTF.org or visit our site at TeamIzzy.com

Thank you for your continued support

GO TEAM IZZY!!!!!!!!!!!