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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!




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Comments

8 Comments

Marcy Andre
By Marcy Andre
Hi Ashley and Becky,
A corn maze is one thing I have never attempted. If I am ever in up your way around Halloween I just might be tempted to try but only if you are with me, Ashley. Do you have plans for this year's pumpkin? Like, Linda, I also enjoyed the prayer about Halloween.
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Linda Lee
By Linda Lee
I'm delighted to hear Ashley is getting better. I also appreciated your thoughtful words about the holiday on Oct 31. Love, Linda
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Sherri Silesky
By Sherri
Good to know you're feeling better, Ash. I'm thinking of you always....praying too!
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Jane Gardner
By Jane Gardner
I am so glad to read that Ashley is feeling better Becky. I know it is so hard to watch someone you love suffer and I can't imagine how hard it is for you and Dan. I keep Ashley in my prayers for healing and hope she and the whole family have a wonderful October. I love this time of year and hope it brightens your lives too.
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Charlie Mancuso
By Uncle Charlie
"Feeling better" is GOOD!
Thinking about you!
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Claudia Siebenmark
By Claudia Siebenmark
So thankful to hear Ashley is feeling better a little at a time. Great news! Thank you for this update Becky! Much love to you all. And always, much prayer.
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susan white
By Gene and Susan White
Good to hear Becky! Thanks for the updates. We've been thinking about you and sending you all love, prayers and good thoughts that Ashley continues to improve and we can have another hour at Starbucks :) Hugs!
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