| Bob was 28 years old when he first learned that he had a tumor in his spinal canal, in his lower back. The doctors removed the tumor and told us it was a one-time thing and to go on with our lives.
After ten years, the pain returned. Doctors found four new tumors, of varying sizes, again in his lower spine. Two more surgeries followed but unfortunately the pain was not relieved; in fact, it has grown progressively worse, as we later learned is common for NF patients. Bob was officially diagnosed with Schwannomatosis, the rarest form of NF, in 2005.
Throughout the whole process, the Children's Tumor Foundation has been an invaluable resource. Too many doctors know little or nothing about neurofibromatosis (NF), a disorder that causes tumors to grow on nerves anywhere in the body. Most people have never even heard of it (we hadn't.)
There is no treatment, no cure for NF. To make matters worse, there is no genetic test for Schwannomatosis which means we don't know if our children, Jack and Gracie, carry the genetic mutation. Thankfully both show no signs of the disorder.
Bob wakes up every day in pain. Some days are better than others - the worst are the days when the pain is barely controlled by medication. We take it one day at a time. But we know we're lucky. Our greatest blessing is our two beautiful children and we'll do anything we can to help find a cure for NF so no child has to endure the harsh realities of life with NF.
That's where you can help. CTF funds amazing research. Due to CTF supported research, a candidate gene for Schwannomatosis was identified last year and exciting advances in drug therapies and treatments are on the horizon. Your contribution can make a major difference. No amount is too small - $10, $20, $50. At CTF, every dollar counts. Help give our family, and the over one hundred thousand families who are living with NF, hope for a future without neurofibromatosis. |
