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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

Fuzzy hearts and other organs!

Hi everyone!
Meet 'heart', part of the gang on the website, 'iheartguts.com'!  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!


heart
6 people hearted this

Comentarios

14 Comentarios

Charlie & Marie Rensel
By Marie Rensel (your dad's cousin from NY)
Ashley,I'm thinking of you at just 23 years of age suffering through a miserable disease while many of us are complaining about the little nothings that "bother" us in our lives! We should just shut-up!!! God be with you in your suffering. I pray that you can use it to bring others to God, or bring help to others who suffer like you in many ways. You are on your way to being a saint!!
Would love to meet you again sometime. The Mancuso reunion is in 2 weeks and we will be thinking of you then. Love, Marie
heart
1 person hearted this
Claudia Siebenmark
By Claudia Siebenmark
Hi Ashley. I love your fuzzy heart. And I love that beautiful heart that's inside of you :). I hope this note finds you feeling better and the rash long gone! Sending love and hugs your way! And prayers always. Going to go check out the fuzzy organ site. These little guys have to be way too cute. Say hi to that awesome mom an dad you have for me. Love you dear Ashley!
Claudia
heart
1 person hearted this
Jane Gardner
By Jane A. Gardner — last edited
I am thinking about you Ashley and praying you recover from this latest problem with the skin rashes. This is so uncomfortable and I know you are facing it with your usual strong spirit. I hope the Grumpy Cat is a comfort to you and please know I love you my darling niece.
heart
1 person hearted this
Sherri Silesky
By Sherri
I'm so sorry, Ashley! I am praying for you as always and will keep your rashes in mind too. I love to read as well. Your mom is a champ and you are so blessed to have her at your side. I know it must feel rough sometimes, trust me. Just hang in there the best you can and know that I'm rooting for you as well

love
sherri
heart
1 person hearted this
Chris Ericksen
By Chris Ericksen
I sure do hope your rashes clear up soon. Your heart is awesome 😎
heart
1 person hearted this
Danna Watson
By Danna
Ashley! I read your post about your rashes, I am so sorry. I can't imagine how frustrating and painful that must be. I think about you often. Be strong sweet girl!
heart
1 person hearted this
Linda Lee
By Linda Lee
Praying for you Ashley, for your skin to heal and for your tummy.
I also pray for you to have more energy. I hadn't known skin was involved in your condition. I hope the long days of more daylight will encourage you even if you are not always out enjoying them.

We watched our local grandchildren from Sun eve till tonight. Their mom had some tests and a scan in Seattle. The girls are 9 & 11. The boy is 4. We have 9 more grands in Ohio, but we don't get to see them often at all. We are so thankful that our son and his wife moved back from Italy one year ago. The reason was for his wife to chemo for cancer, but she is done with that and doing well, if not always patient about not being where she wants to be physically. She had surgery last April 28 and again this March, so I tell her she is doing well, but it takes time for her body to heal and restore from the treatments and surgeries. Her children pray for her too. They are such sweetheart children, full of snuggles, smiles and laughter. They may fuss some about whose turn it is on an electronic device, but their parents wisely limit their time on those so they will do healthy playing and use their imagination playing legos, playing with and training their young dog, running and playing, coloring in Grandma's new color books with new colored pencils and reading. The 11 yr old made up her own recipe for a chocolate cake for Father's Day. Wow, I'm nearly 65 and I've yet to create new baking recipes. The 4 yr old told me Grandpa sure is generous because he gave him 3 golden marbles to keep. They make me appreciate each day, even if I don't feel my best, which is often.
What are you reading on Kindle, what type of books? I'm a reader too. Love to you and your family, Linda
heart
1 person hearted this
Dixie Baeth
By Dixie Baeth
You and your family are always in my mind and in my heart, sweet girl.
heart
2 people hearted this
jo lembo
By Jo Lembo
So Ashley, can we buy your fuzzy organs? Ha! Let me know how to do it.
heart
2 people hearted this
Joan Magnelli
By Joan Magnelli
Hang in there Ashley! You are such a brave girl!
heart
2 people hearted this