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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

Shhhh! A little surprise for Ashley!

Dear Family and friends,

Ashley is sleeping as she does during the day, and when she wakes up early this evening, we have a 'gallbladder' to add to her iheartguts fuzzy collection! She is having a rough time right now with arm, wrist and leg pain, and her continued nausea won't allow her to take her breakthrough pain medication, so she has been pretty miserable.

Saturday, August 8th, Vans Warped Tour was here, and since Ashley couldn't go, she asked if we would go for her. VWT creator, Kevin, had sent Ashley some awesome t-shirts and posters, which she wanted to thank him for. Ash's brother, Stephen, and I were able to go and thank Kevin and his family for their continued love and support for Ashley.

Medically Ashley has a couple of appointments in the next month, but she chooses to mostly stay close to home due to the constant nausea and fatigue which dictates what she has energy to do each day. She is deeply disappointed that she is unable to go camping again this summer, as that is one of the activities she greatly enjoys. Ashley has taught herself to knit and has made a couple of cute hats!

Thank you for your thoughts and prayers of good health and healing for Ashley!

Comentarios

8 Comentarios

Mary Lee Starr
By Love,Mary Lee
May God's joy shine down on you like rays of the sun,filling your heart,soothing your spirit,and easing your pain.(But be sure to wear some kind of joy-screen; you wouldn't want to get overjoyed)

Praying for you
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1 person hearted this
Sharon Bingham
By Sharon Bingham
I think about Ashley every day and pray for her. She is so special.
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1 person hearted this
Sharon Bingham
By Sharon Bingham
I think of Ashley every day and pray for her. She is so special.
Love to all of you from me.
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1 person hearted this
susan white
By Gene and Susan White
prayers and hugs and love to all of you wonderful Vacanti's!
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1 person hearted this
Joan Magnelli
By Joan Magnelli
I don't know if you've tried acupuncture for nausea, but I'm finding it works quite well. Sending virtual hugs and good wishes for pain-free, nausea-free days and nights!💜
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1 person hearted this
Lois Collins
By Lois
I love you guys. Really, really love you guys.
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1 person hearted this
Sherri Silesky
By Sherri
Ash, you mom sent me two pair of Iheartguts socks and a great funny card to go with it. It should be called ILAUGHED mygutsout! Very funny.....wishing you well. I saw my pain doc last week and got a new script for medical mariujana which I use VERY sparingly. I've also been listening to new bilaeral music...one I posted on my blog. I just bought four of them...you can listen for free on youtube but I wanted to support his music and it was less then five bucks so what the heck.....be well!
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1 person hearted this
jo lembo
By Jo & Nick Lembo
Soldier on Ashley. You're incredibly courageous to fight the way you do every day. Most of us have no idea how you do it or how tough it is. You're amazing. Here's to sunshine and rainbows for you!!
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1 person hearted this