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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

Spring!

Hello to our family and friends, and happy spring!
The photo on the main page is a picture of Ashley on her very first day of high school, nine years ago, although it feels like just yesterday.  I had forgotten about this picture, and Ashley's dad had saved it on his phone.
Ashley has been able to get out more, about twice a week, in the evening, and that has been wonderful for all of us, even though they are very short trips to the store.  Her stomach is still topsy-turvey at times, but it's been great seeing her happiness in having some time away from the house, and away from us.  Though Ashley would much prefer driving, and a car of her own, at least we can drop her off, and she can use her electric scooter to shop.  She has talked about her disappointment in not being able to ride in the car for any length of time, because she knows, unless things change, she will be unable to attend Vans Warped Tour for the second year in a row.  
Even though Ashley may not get out physically, she keeps up with what is happening with her family and friends, because you are all so important to her!  She may not respond to your text or email right away, but her intentions are to do that when she has the energy.  Sometimes, the energy just doesn't come to her enough to respond.  I can tell you that every single morning, without fail, Ashley prays for each and everyone of you, for God's love, protection and healing.  Ashley is most grateful that her Grandpa recently came through a serious procedure with great success!
Please keep Ash in your prayers, that she may be healed and restored.  We thank you and deeply appreciate you.
All our love,
Ashley, Becky and Dan

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Comments

9 Comments

Marcy Andre
By Marcy Andre
Hi Ashley,
That is a great picture. You are still every bit as beautiful today as you were when that picture was taken. I know because your mom showed a picture of you when she was down here in Scottsdale. And you know what??? Everyone made the same observation-that you are beautiful.
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Claudia Siebenmark
By Claudia Siebenmark
So great to hear Ashley is getting out! I pray just what you said for her. And all of you are in my heart and prayers. Love you all dearly. Praise God for answered prayer for Ashley's Grandpa!
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Mary Lee Starr
By Mary Lee
I pray for you
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Charlie Mancuso
By Uncle Charlie
Prayer is powerful.
I pray for you, too!
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Melissa Sevola
By Your NJ Cousins
So thankful to hear that Ashley has been feeling well enough to get out and about. Our thoughts and prayers are always with you. Enjoy spring! Melissa, Chuck, Lea, Kara, CJ
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Amy Barley
By
Great to hear that Ashley is getting out more! Thoughts and prayers are with you guys, always. Thanks for the update!

Amy, Avery and Addison Barley
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Chris Ericksen
By Chris Ericksen
Glad to hear Ashley is feeling better and able to get out to shop 😎
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Carol Miller
By Carol Miller
Thinking of you Ashley! Hugs!
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susan white
By Gene and Susan White
Love to you Ashley and thank you so much for your inspirational messages I read daily! You are an inspiration to all of us. xoxox
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