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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:  www.ctf.org

Ashley was born with a genetic disorder called Neurofibromatosis (NF). You can read more about NF at : www.ctf.org 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

Happy October!

Dear Family and friends,
The picture on Ashley's front page was taken in 2007 at a pumpkin patch in Lacey, WA.  Ashley had such a great time that day, and even at 16, loved choosing her own pumpkins for Halloween carving, getting 'lost' in the corn maze, and petting the goats and rabbits that were at the pumpkin patch.  The smell of apple cider and that crisp autumn air brings so many good memories, and keeps us hopeful for more pumpkin patch adventures to come!
Since being discharged from the hospital in mid August , Ashley has slowly begun to feel better.  She has had several doctors appointments to contend with, and more to come, but it is so good to see her feeling better, little by little.
Between goblins and pranksters, Lord, we seek a quiet corner this autumn evening, to give thanks for the saints whose day this really is.  Be tolerant of our costumed fun, even as you remind us of the pillars of faith upon whose shoulders we stand today.  Keep our trick or treating fun and safe, our faith aware, for it is easy to lose track of what we really celebrate in the darkness of this night. - Margaret Huffman
Happy Halloween!