| Isobelle Daryn Mick
Izzy has Neurofibromatosis (NF1). This disorder can result in tumors to develop anywhere in her body, at any time. It affects 1 in every 3,000 people and is more prevalent than Cystic Fibrosis, hereditary Muscular Dystrophy, Huntington's disease and Tay-Sachs combined.
Due to the kindness of many, Izzy was able to go to Daytona in January to see her name on the #14 Autometrics/CTF Porsche. It was an amazing experience to see all these wonderful families who are living with NF just like us! It has now been one year, as of the 18th of March, since she started chemo. She still has 6 more months to go. We are amazed by how much she has grown this last year. Help us find better, more effective treatments for NF so that she may have 100 more happy birthdays.
NF can lead to blindness, bone deformities, seizures, severe itching, pain, learning disabilities, and cancer. In addition to the tumor on her left optic nerve that we are treating with chemo, Izzy now has a tumor on her brain stem and a plexiform tumor on the left side of her face. This is a scary tumor for us, because they are known to explode with growth and can be very disfiguring. We have no idea if she has any tumors below her neck, as it is too risky to subject her to the amount of sedation that would be needed to perform such a long scan of her body. Izzy also suffers from headaches and has some gross motor delays. She is covered in café au lait spots and also has hypotonia which requires her to wear orthotics in her shoes. We can only imagine the pain she experiences but is unable to put into words due to her age and the fact that she has never known anything different. Neurofibromatosis has always been a part of her life. She thinks that everything she goes through is “NORMAL!” Because of the progressive, yet unpredictable nature of NF, we have no idea what her future holds. We can only watch, wait, and try to make a difference.
NF shows no mercy to age, race or gender. To date, there are only a few effective treatments. There is no cure. We intend to change this!
What you can do to help:
Over the next year, we will be hosting a variety of awareness and fundraising opportunities. These will include walks and runs via the endurance team, tea parties, awareness nights at local sports teams, and crops.
As we create events, They will be posted here or formal invitations will be sent out.
You Can Make A Difference!!
Racing for Research is raising money to support the Children's Tumor Foundation(CTF). CTF is the NF national non-profit organization and has a long-term scientific research plan that lead our efforts to find a cure. It is our collective goal to solve the NF Puzzle one mile at a time, one clinical trial at a time, and one potential drug therapy at a time.
100% of all money raised will go towards research.
Isobelle’s Team has decided to put a stop to NF, to fight for her future, a future that will be decided by Isobelle and NOT NF.
Thank you so much,
Marianne, Darren, James, Izzy and Isobelle’s Team
team_izzy@yahoo.com |
