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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

Dream Catchers

Dear Family and friends,
Ashley's birthday was filled with many loving wishes and gifts.  She was hoping to feel better on her special day, but her energy was low.  Ashley was able to make a wish and eat a slice of rainbow birthday cake before she went to sleep for the day.  A big thank you to all of you that made her birthday special by wishing her a happy birthday!  Thank you, Ori, for sending so many fun candles filled with rings for Ashley to enjoy.
Ash has been giving herself Vitamin B injections since her recent labs came back with very low B levels.  It amazes Dan and I how she can jab that needle right in to her thigh and not think twice about it.
After seeing her Gastroenterologist and Endocrinologist in the last few weeks, there are still unresolved health issues that are just going to take more testing and more time.  Ashley is determined to take October off, though, and try to avoid any medical facility, and have a break.  
The beautiful dream catcher in the photo was made by a young woman in Belgium, who creates dream catchers for those who are chronically ill.  It is simply beautiful, and the note that came with it was filled with hope and love.
The last few weeks have been tough, and as always, Ashley so very much appreciates your prayers and positive thoughts.  Every morning, before going to sleep, Ashley and I pray for all of you.  Peace be with you!

4 people hearted this


8 Comentarios

Marcy Andre
By Marcy
Ashley happy belated birthday. I am sorry that I missed your special day. I also admire your courage when it comes to giving yourself the Vit. B shot. Sending prayers and hugs from your pals in Scottsdale.
1 person hearted this
Jane Gardner
By Jane Gardner
Ashley, I do love you and want you to only have good days. I hope you feel better during October and going into the holiday season. One of my favorite memories of Halloween was visiting you and your family and our trip the farm with the pumpkin patch. You and Nick were so cute and so excited and we all had a wonderful day. Love, Aunt Janie
1 person hearted this
Claudia Siebenmark
By Claudia Siebenmark
Ashley. I missed your Birthday...please forgive me. Praying round the clock for you and that the Lord will restore your energy and strength! The dream catcher is beautiful. May it catch all your beautiful dreams, and bring them to fulfillment. Happy Birthday late, dear Ashley. We love you!
1 person hearted this
Charlie Mancuso
By Uncle Charlie
You are always in my prayers!
Never give up!
1 person hearted this
Mary Lee Starr
By Mary Lee
"Let the joy of the Lord be your strength.May His peace fill your heart day and night:As you walk with the Lord in the light of his Word.You will find that He'll lead you all right."
Praying for you
1 person hearted this
susan white
By Susan White
I wrote and entire message to you and then I couldn't remember my password to log in CB so I am not sure I can recreate it but I'll try. Too many passwords in life!! Sending you special prayers and love and yes you are an inspiration to all of us! Send you peace and love and to your wonderful parents too.
1 person hearted this
Sherri Silesky
By sherri
I LOVE dream catchers. I've always had one hanging on the light next to my bed! Happy Birthday and best of luck to you....seems like we have a lot of the same health challenges!
1 person hearted this
Mary Phlypo
By Mary Phlypo
Ashley, I hope you enjoy the gorgeous month of October to the fullest. I think about you quite often, and I want you to know that I wish you only the very best. You should also know that you inspire me to be a better person in my life. Take care.
1 person hearted this