Michelle Hirsch Donovan writes: “Cycling is a relatively new sport for me. I started 4 years ago after my daughter, Riley was diagnosed with type 1 Neurofibromatosis (NF). I met another NF mom at a NF, Inc Northeast fundraising event ~5 months after Riley’s diagnosis, and at that time she and I promised to support our ‘NF kids’ by buying ourselves bikes for Mother’s Day, so that we could ride 100 miles in the 1st annual Coast to the Cure NF bike ride. We knew that 100 miles would be a difficult task for us, but we also knew it was a small obstacle in comparison to the many challenges our kids have to deal with on a day to day basis and throughout their lives.
NF can affect everyone differently, but typically it consists of a constellation of tumors on nerves, gross motor challenges, bone abnormalities, cognitive changes, and skin ‘freckling’ (café au lait spots). Riley had gross motor delay as a baby, but at the time it was for unknown reasons. Prior to Riley’s 5th birthday I noticed increasing skin spots on her body and facial asymmetry. It is these 2 findings that ultimately led us to her NF diagnosis. With time and numerous tests we would come to find out that Riley has at least 3 plexiform neurofibromas in her head and neck, abnormal bone development of her hard palate, scoliosis that requires bracing, and attention deficit disorder. Needless to say, these were hard facts for my husband and me to swallow, but between Riley’s infectious energy and grace, and the support from NF, Inc NE and the many extraordinary friends we have made because of Riley’s diagnosis, we have become more educated regarding NF, more dedicated to raising funds for NF research, and have vowed to spread NF awareness.
Riding in the Coast to the Cure has been a life changing experience. It has brought a new and exciting way to promote health and exercise into my life, and my family’s lives, as Riley, her brother, Shea, and my husband, Michael, now also ride (the kids even do triathlons). This new ‘hobby’ has taught all of us that no matter the size of the obstacle – including Riley’s diagnosis and the difficulties that come with it – that with effort and commitment you can complete and handle anything you put your mind to. For my Riley – I will forever ride to the end of the earth and back”.