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

Elizabeth, or in Gaelic, 'Eilis'

Happy luck of the Irish to all of you!
Ashley is a bit Irish, from her mom's side of the family (that would be me), so I wanted to find a Gaelic translation for Ashley.  What I found was that there isn't really a translation for Ashley, so I went with her first name, Elizabeth, and found the Gaelic or Irish translation, 'Eilis'!  There should be an accent on the second i, but I am unable to do that here!
Ashley's symptoms continue, but she is seemingly more comfortable these past few days, with more humor and happy smiles!  She had a very good doctor's appointment last week, which was quite a relief, for those are far and few.
The Cupid's Undie Run 2015, is now in the record books, raising over 3.2 million dollars for Neurofibromatosis research!  Team Skivvies4Ashley raised $13,730 in Seattle, and Ashley received the trophy for top fund raising team again this year-yay!  We couldn't do it without the absolutely incredible support of our family and friends.  Thank you, thank you for giving all of us HOPE through research!
A special shout-out and thanks to our team member, Ryan, whose fund raising efforts put him on top of the 400 participants in Seattle, earning the coveted 1rst place silver undie trophy.  All of Skivvies4Ashley team members are treasured in our hearts!
May the road rise to meet you,
may the wind be always at your back,
may the sun shine warm on your face,
the rain fall softly on your fields;
and until we meet again,
may God hold you in the palm of his hand.
-A Gaelic Blessing For Saint Patrick's Day, author unknown


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Comments

5 Comments

Jane Gardner
By Aunt Jane
I am so proud of my family and their support of Ashley.
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Marcy Andre
By Marcy Andre
Ashley, congratulation on your team being the top fund raiser again. That is beyond awesome. Glad to read that your doctor's visit was a good one. Wishing you a Happy St. Patrick's Day.
Claudia Siebenmark
By Claudia Siebenmark
God Bless you all mightily. Love and prayers, always.
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Mary Lee Starr
By Love,Mary Lee
I pray for you
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Stephen Vacanti
By Stephen
We had such a great time celebrating in your honor, smash! The team really loves you. Happy St Pattys day!
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