Make Sure Ashley Is Not Alone This Holiday Season

Your contributions to Ashley's journal this year made sure that they never felt alone. Your tax-deductible donation in Ashley's honor will make sure that Caringbridge continues to bring hope and healing to those who need it most.

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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!