We are participating in Steps2Cure NF to raise awareness and support for those affected by neurofibromatosis (NF), a genetic disorder that causes tumors to form on nerves throughout the body. The money raised will support the mission of NF Northeast, funding patient support programs, advocacy efforts, and cutting edge research, and will provide hope and help to individuals and families impacted by NF. Every step we take brings us closer to better treatments, increased awareness, and a brighter future—thank you for your support!
Coleton is a strong, courageous, loving, funny, and kind child. He has dealt with far more in his 11 years than any child should ever have to face. Yet he is still more concerned with the health of others. He has true compassion and empathy for those around him. He has now had three spinal fusions and lives with chronic headaches and back pain. He also has myelin vacuolization, cognitive delays, dural ectasia, and skeletal dysplasia, among others. Unfortunately, NF has no cure and no way to know how mild or severe the disease will become. All we know is that it is a progressive disease and will become more challenging over time. There are so many manifestations of NF ranging all the way from hypertension and benign tumors all the way up to aggressive cancer and brain glioma. We take it day by day, and we are beyond thankful that Cole continues to be resilient and happy.
Coleton only knows a bit about his disease. He knows what issues affect him and that every case is unique, like a snowflake. We have chosen to carry a burden of fear and worry for him. We will shoulder this as long as we possibly can so he can have an unburdened and spectacular childhood. No child should have to worry or fear for their health. We wish that by the time he is old enough to understand, there will be a great treatment or cure.
Coleton loves his family, dogs, God, school, friends, play dates, and video games of course. He is no different than any other 11-year-old except for his bravery and compassion that are beyond his years. Every time I tell Cole there is great research going on for NF, he tells me, “I think they should cure childhood cancer before they cure me.” When we ask him if he had one wish, what would it be? He states things like a cure for all sick kids, or cure cancer, or that all people in heaven could come back for one day to see their family. He is truly a very special boy, and he has our hearts full of pride. Truth be told, sometimes he does throw in a PS5 along with these wishes, Haha. Hey, we’re raising a kid, not a Saint after all. LOL!
We are hoping you will all help us rally around our champion and help us raise funds for all those who suffer from this rare genetic disorder. Together, we can help raise money for research. Research leads to treatments and cures. Science and genetics have come so far, and we are so very hopeful. Having those we love walk with us and help us support our son gives us more joy than you can imagine.
By joining our team, you'll be supporting NF Northeast, a nonprofit organization that provides critical resources, advocacy, and research funding to improve the lives of individuals living with NF and their families. Their work drives hope and progress in the search for treatments and a cure.
We’d love to have you on our team, and it only takes a moment to sign up! The earlier you register, the better, so we can hit the ground running with fundraising and planning for the big day.