Ashley V. - Quilt Finished in 2008

Born: September 3, 1991

Illness: Neurofibromatosis type 1

Ashley's Story

Written by Ashley's mom in May 2007

When Ashley was born, she was a very healthy looking baby girl with beautiful hazel eyes and light brown curly hair.  At three months of age, we noticed many 'cafe au lait' spots on Ashleys torso and legs.  Her pediatrician diagnosed her right away with Neurofibromatosis (NF).  Nf is one of the most common genetic disorders, occuring in every 1 in 3,000 live births.  50% of the time, NF is a mutation, meaning there is no family history of NF.  This was the case with our daughter.

When Ashley was 2 1/2, her airway was being threatened by a tumor called a plexiform, which simply means the tumor has 'arms' that entwine around blood vessels, nerves, and other organs.  This is what NF does; causes tumors to grow along the nerves of the body.  All of Ashley's tumors, from head to feet, are internal.  Everday, Ashley lives with pain from these tumors.  Some days her legs hurt, other days it's her chest, or shoulder, or her hips or stomach.  Chronic pain is what Ashley has to deal with everyday, when all she should have to worry about is what to wear to school, or what she's planning to do with her friends on the weekend.  Instead, Ashley usually doesn't feel like doing much; even going to school is a struggle.  We have faith that there will be treatments found for NF in Ashley's lifetime, so that Ashley, and the over 100,000 people affected by NF just in the United States alone, will be able to live pain free.  Please read more about NF at:  www.ctf.org