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Ashley’s Story

Our beautiful daughter, Ashley, was born with Neurofibromatosis Type 1.  Ashley lives with chronic pain from tumors that grow on the nerves throughout her body.  Please read more about neurofibromatosis at:

Ashley was born with a genetic disorder called Neurofibromatosis (NF). You can read more about NF at : This disorder has caused numerous tumors to grow internally on Ashleys nerves. Ashley has tumors throughout her body, including her extremities. These tumors cause Ashley to have chronic pain, and she has had several surgeries to debulk the most dangerous and painful tumors. There is no treatment at this time except surgery, which often cannot be performed because surgery results in dysfunction because nerves have to be cut to remove the tumors. We are committed as a family to fund research for Neurofibromatosis until treatments and a cure are found, and we have faith that that will happen in Ashley's lifetime.

Latest Journal Update

Dream Catchers

Dear Family and friends,
Ashley's birthday was filled with many loving wishes and gifts.  She was hoping to feel better on her special day, but her energy was low.  Ashley was able to make a wish and eat a slice of rainbow birthday cake before she went to sleep for the day.  A big thank you to all of you that made her birthday special by wishing her a happy birthday!  Thank you, Ori, for sending so many fun candles filled with rings for Ashley to enjoy.
Ash has been giving herself Vitamin B injections since her recent labs came back with very low B levels.  It amazes Dan and I how she can jab that needle right in to her thigh and not think twice about it.
After seeing her Gastroenterologist and Endocrinologist in the last few weeks, there are still unresolved health issues that are just going to take more testing and more time.  Ashley is determined to take October off, though, and try to avoid any medical facility, and have a break.  
The beautiful dream catcher in the photo was made by a young woman in Belgium, who creates dream catchers for those who are chronically ill.  It is simply beautiful, and the note that came with it was filled with hope and love.
The last few weeks have been tough, and as always, Ashley so very much appreciates your prayers and positive thoughts.  Every morning, before going to sleep, Ashley and I pray for all of you.  Peace be with you!