My 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.

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Becky Vacanti added a new photo.

Becky Vacanti posted a new journal entry, "Ashley's 8th Make-A-Wish anniversary!".

Dear Family and friends, Today is a very special day, because it is the eighth anniversary of Ashley's Make-A-Wish, which was on July 15, 2006, at Van's Warped Tour at the ... Read more

Becky Vacanti added a new photo.

Becky Vacanti posted a new journal entry, "Van's Warped Tour 2014, here comes Ashley!".

Happy weekend!  Today we pile in the car and head for Ashley's Warped tour 2014 mini-vacation!  Tomorrow, Ashley will be a special guest at the Portland Warped tour, as ... Read more

Michele Diefenbach signed Ashley's Guestbook.

I did not see your entry until today. As a mother, my heart breaks for all of you. God is surely with you though, because despite the worry and heartache, you all ... Read more

Sally Martin signed Ashley's Guestbook.

May God bless her with better days and ease her anxiety, prayers for your family! Sally Martin, Gabe's Mom Read more

Becky Vacanti posted a new journal entry, "HOPE".

Happy spring to our family and friends, Numerous times over the years, we have heard the remarks, ‘I NF but NF does not have me’.  I’ve tried to reconcile that ... Read more

Becky Vacanti added a new photo.

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