4ashley

Every month has a slew of different things that are listed as National 'something' awareness. May alone has Stroke Awareness, Asmtha & Allergy Awareness, Motorcycle Safety Awareness, HIV Vaccine Awareness, and even my own condition, Fibromyalgia (FMS) Awareness, and I'm sure there are many others. But the one that is closest to my heart is this,...

May is World Neurofibromatosis Awareness Month

What is NF, you might ask? Neurofibromatosis encompasses a set of distinct genetic disorders that cause tumors to grow along various types of nerves and, in addition, can affect the development of non-nervous tissues such as bones and skin. Neurofibromatosis causes tumors to grow anywhere on or in the body.

NF is near & dear to my heart because my youngest daughter, Ashley, has it. I recognized the signs when she was born, but she was not officially diagnosed with the disorder until 2002 when she was 2 1/2 years old. For the past three years she has been monitored by MRI every 2-3 months in order to carefully gauge her tumor growth. Ashley has what are known in the medical world as bilateral optic nerve gliomas,... in lamen terms, she has tumors on her eyes. These are technically brain tumors that are growing along the optic nerves and into the chiasm of her brain. While these tumors are not cancerous, they are considered semi-malignant in terms of NF because they do threaten the health of her eyes. Essentially, they could cause her to go blind in one or both eyes. There is no cure for NF, and there is no way to predict the path she'll follow. God willing, she could continue through life without these things ever causing her any more grief than merely monitoring them.

While I support all types of awareness because it is key to any situation, I would just like to take a minute to focus on this particular cause. If this is new to you, or if you haven't visited in awhile, please feel free to visit our website 4ashley.com as well as the Children's Tumor Foundation, formerly known as the National Neurofibromatosis Foundation -NNFF, ctf.org.

HELP US SPREAD AWARENESS ABOUT

NEUROFIBROMATOSIS

(This blog site hosts all past, present & future journal entries from Ashley's website. To view them exclusively, you may follow the "Tumor Watch" link to the right.)