Tyler P. - Quilt Finished in 2007

Born: June7, 1991

Illness: Neurofibromatosis, ADHD, Learning Disability

Tyler's Story

written by mom Donna

My son Tyler has Neurofibromatosis.

He has had many complications with this illness, some of them being learning disabilities, multiple tumors on the body, problems walking/balance. Tyler also has a sister named Sunshine, who does not have this disease, for that, we are very thankful.

Tyler has a line of tumors down his spine, a plexi-form on the right side of his spine, a cluster of tumors on his brain (cerebellum), tumors covering the right optic nerve, tumors on the lung apices, difficulty walking, constantly has nausea and takes high doses of pain medication a day.

This disease is so unpredictable. This is a genetic disorder that causes the growth of tumors. The tumors grow along various types of nerves and on the brain, spinal cord, soft tissue organs, the bones and skin. Neurofibromatosis can cause vision loss, hearing loss, bone deformities, malignant cancer, learning disabilities, paralysis and death. NF occurs in 1 in 4,000 births. It can be passed on or can result from a spontaneous gene mutation. There is no cure or treatment for Neurofibromatosis. Surgery is often not an option and tumors have been known to grow back after removal. Research over the past few years have identified and isolated the DNA gene that causes Neurofibromatosis and there is hope that one day, effective treatment and a cure will be found for NF. We are in the process of trying to get Tyler on disability, what a fight that is!

Thank you and May God bless you all.