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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

Dear Doctor

Dear Doctor,

 Please allow me to thank you for your compassionate and expert care of our daughter, Ashley.  For many heart wrenching years, Ashley has endured too many negative experiences in the medical world.

 Because of the numerous complications that the tumors from Neurofibromatosis have on her, Ashley has suffered needlessly through the lack of knowledge about how these tumors can affect her daily life.  As you know, even though pain from these tumors is Ashley’s most challenging symptom, there are many others, such as extreme fatigue, which allows her only an hour or two a day to be out of her bed.  The tumors also wreak havoc on Ashley’s hormonal balance, sucking the vitamins from her system and leaving her feeling hot, but also cold, at the same time. Because of the tumors in her left ear, as you know, Ashley cannot hear very well because of the constant fluid that builds up and ‘crackles’, making Ashley miserable as an ear infection does to us.  Ashley always turns toward her right side when sleeping or sitting up in bed, so that she is able to have some hearing available to her in her left ear.

 Thank you, doctor, for not doubting Ashley as many doctors and health care providers have in the past, when she tells you that she is unable to lay on a hard table for two hours for a scan or a lab test, because the spinal tumors and leg tumors hurt too much to endure such a test.  Thank you also for understanding when Ashley is unable to lay on her stomach and chest for the same reason.  We also greatly appreciate your understanding of her constant, unending nerve pain, coming in waves and demanding that she have some sort of strong pain relief. Knowing that acupuncture and biofeedback are only Band-Aids on a pain that is so strong, and most people will never experience pain such as this in their lifetime, thank goodness.  But Ashley does, and she is tired of the judgmental comments and questions from the nurses, medical assistants, and the doctors that she needs to help her through this life. 

 Thank you, doctor, for ensuring that your co-workers and staff are well informed of Ashley’s needs, so that if you are unavailable or on a well-deserved vacation, Ashley is not told ‘no’ when she needs their help.  Thank you, doctor, for you are a blessing and a gift from heaven.  Please continue to walk this path with us, and don’t leave Ashley behind.  You are a part of our team, a vital part of Ashley’s life, until NF can be treated effectively.  Our family, and most especially, our precious daughter, depends on you.

 Praying for this doctor to come into Ashley’s life!

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Comentarios

5 Comentarios

Charlie Mancuso
By Uncle Charlie — last edited
I pray that your search is not in vain. Continue to be steadfast!
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2 people hearted this
Jan Welling
By Jan Jensen
This is heartrending to read at the very end, Becky. I cannot begin to imagine the strength Ashley has to endure this each waking minute. And also the pain you and Dan have, knowing what your beloved daughter is going through. I just wish you could find a doctor and medical staff who were equipped with the knowledge and compassion needed to help Ashley in her difficult times. You are a special family and I feel honored to know you. Prayers for all of you.
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2 people hearted this
susan white
By Gene and Susan White
You know Becky I think this message was liberating for your own soul to write. And I believe many of us who have been caregivers and trying to find solutions over so many years of on-going health issues is needless to say exhausting and frustrating. It's indeed a helpless feeling being on the sidelines loving her so much and seeing her suffer. I truly believe western medicine is sometimes simply a big big business (which it is) and every good medical doctor is busy busy busy. Gone are the days of house calls which wouldn't be a bad idea to reinitiate simply because in those days it seemed Dr's took more time in the environment of a house where the patient is there in their comfort environment. Wandering off on this but you know what I'm saying. I remember running into you a month ago and you and I were talking about these exact things. Praying for solutions and that Dr. that might appear . . .just like you have a lot of energy to reinvent the wheel too right. xoxoxo HUGS to all of you.
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Carol Miller
By
Sharing this with my medical worker friends... love you and praying for that care for Ashley.
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Sherri Silesky
By Sherri — last edited
I can relate to each and every word, Becky. Thank you for posting this incredible piece. I have stopped writing on my blog because I feel so desperately helpless in the midst of the same issues, with no one there beside me to help. Family may want to, but they have no clue on how to go about it, anymore than I do. i pray for Ashley every single day of my life....you and your family have been in my heart and soul for too many years to count.
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