Taryn G. - Quilt Finished in 2007

Born: September 27, 1996

Illness: Neurofibromatosis, Astrocytma Brain Tumor

Taryn's Story

Written by Taryn's mom Melissa in March 2007

Taryn was born 9/27/96 and she had NF(Neurofibromatosis) at birth. You could see her tiny dark cal's. I was aware of NF due to the fact that I myself was DX with Nf and she also has a brother Tyler , who is older that has it. Taryn also has a younger sister Aubrie who is now in the process of finding out if she also has NF.

Neurofibromatosis 1 (NF1): also known as von Recklinghausen NF or Peripheral NF. Occurring in 1:3,500 births, NF1 is characterized by multiple cafe-au-lait spots and neurofibromas on or under the skin. Enlargement and deformation of bones and curvature of the spine (scoliosis) may also occur. Occasionally, tumors may develop in the brain, on cranial nerves, or on the spinal cord. About 50% of people with NF also have learning disabilities.

Taryn was dx in June of 06 with a astrocytoma (brain tumor). She will have a MRI every 3 month to see if the tumor is growing, and how fast, then we will decided what to do. She has severe headaches daily which she is on pain meds for. Taryn also has Syringomyelia (cysts in her spinal cord). She has to be very careful of any activity not to hurt her back or neck area. Taryn is in 5th grade and she just loves school.