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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:

Ashley was born with a genetic disorder called Neurofibromatosis (NF). You can read more about NF at : 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

Fuzzy hearts and other organs!

Hi everyone!
Meet 'heart', part of the gang on the website, ''!  Heart is just one of the many organs that you can order from this website, and this is Ashley's first fuzzy 'organ', one of many that we foresee in Ashley's new collection.  This is a wonderful way to put some humor into a tough situation, and Ashley 'loves' her heart (: !
Ashley has had some pretty rough days, just not feeling well and no energy, and we are grateful for any prayers and good thoughts that you can send her way!  Messages here are MOST welcome!  Between head to toe rashes, for which there doesn't seem to be a cause from food or soaps, Ashley's skin has been miserable for her to deal with!  We now own stock in hydrocortisone creme, neosporin, benadryl, and an assortment of bandages.  This is a common manifestation of Neurofibromatosis, but a tough one to deal with daily!  Along with the 'iheartguts' website, Ashley has been reading books on her Kindle, making lanyard bracelets, and watching a few choice youtube videos.  
Please pray for her to have her energy and skin restored, and for her tummy to feel better!  Thank you so much for leaving her an encouraging message here, and for your prayers!

6 people hearted this



Justine Smith
By Justine and Darren Smith
We love you Ashley! Our thoughts and prayers Re with you.
2 people hearted this
susan white
Always in my prayers too . . have to check out your website which I am going to do after posting this message to you. Your Mom and I have talked about how much better we think the medical world should be in having more instant solutions to situations. Obviously this is not the case as we know. Wondering what kind of books you like to read. I love my inspirational messages that you gave me. They don't always work but they help! You are amazing and your Mom and Dad too! If there is anything I can do besides support you, love you and now going to your website for further enlightenment about what you currently love, let me know. Hugs xoxox Susan
2 people hearted this
Barb Anderson
By Barb Anderson
Hi Ashley, I have not personally met you, but I am happy to be a new prayer warrior for you and your family. I have gotten to know your mom and your sister in law Chelsea in recent months because my daughter, Jenna, married Chelsea's brother Trevor in December. You are blessed to have such a loving family! I am now blessed to be able to pray for all of you as you continue this daily "journey." I will be praying for the Lord to give you a new "spurt" of energy so that you are feeling better, and that He will guide your family/your doctors to find something that will give you some relief from your skin rashes. I love the picture of the "fuzzy heart"... it makes me smile! I am glad to know that it makes you smile too! :) Take care, and know that I will be praying for you.
2 people hearted this
Sharon Bingham
By Sharon Bingham
You are always in my prayers, Ashley. My best to you always.
2 people hearted this