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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

Riding the waves of NF

How is Ashley doing?  We never get tired of that question, but answering it can be very difficult.  Each day for Ashley is different, and some days are just better than others.  There are more fears in Ashley's voice, questioning her future health, discouraged and tired of the same four walls day in and day out, finding it hard to explain how these NF tumors literally suck the energy out of her, physically and mentally, but never spiritually.  The beauty of Ashley's spirit is always present, always in the forefront of everything about her, and we are so blessed to be in the presence of her!
I want to share an excerpt from another caring bridge site, from our friend, Susan, about her very recent experience with her husband, because Susan expresses completely, Ashley's recent hospital stays and what they accomplished in helping Ashley to feel better:

I  spared no words to the entire clinic  that as long as one is IN the care of hospitals with 24/7 fantastic care  that they can "patch" people up, pump them full of drugs and then viola life is better and THEN . . send them home and you're on your own . . no support outside of hospital/dr offices.  How nice it would be when one is released from a hospital especially with a long history of illness that there would be SOME support at home ..  but that's not the way our system works.  So you do the best you can . . hope for the best but I know for a fact that there should be some support transitioning.  
It seems in many ways that medicine has lost the 'science', the challenge of taking someones symptoms and theorizing, investigating, and coming up with a way(s) to help them feel better.  It takes too much time, too much money, unfortunately, for a physician to be able to help a patient other than the regular diagnosis, and completing the checklist specific to that diagnosis according to other outside factors, that may or may not help the patient to recover and lead a more normal life.  So those, such as Ashley, and Susan's husband, are left to 'wander' from doctor to doctor, exhausting themselves physically, mentally and financially just to try to feel better.
There are things that we CAN do, and will continue to do until we have our Ashley back, healthy and strong!  We can support the Children's Tumor Foundation, an exceptional charity that funds research for Neurofibromatosis, and Schwannomatosis.  We are not ashamed to ask you, because we know that this is the greatest hope for Ashley, for Sherri, Chelsea, and those who have passed because of complications from NF that we personally have known, lies in the funding of research, that most physicians do not have time for as they care for so many.  Research is the key to #endingNF!
Please donate to the Cupid's Undie run, team Skivvies4Ashley, at:  www.cupidsundierun.org, or
my.cupids.org/teampage.asp?fundid=17643, pasted in your browser.
Thank you!











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Comments

3 Comments

Cheryle Noble
By — last edited
Glad to know and hear you are hanging in there....we live it everyday too.<3 God Bless....
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susan white
By Gene and Susan White
We truly are on the same page . . thank heavens for CB. Thanks heavens to you all in your faith, love, strength and perseverance. This is not an easy road. Wish we could all convene together and hug each other. I'm not feeling as strong as I used to . .I know we have to be but sometimes it's just not that simple. Hugs to all.
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Melissa Sevola
By Your NJ Cousins
Prayers continue. Stay strong.
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1 person hearted this