Sunday, 18 May 2014

May 18 : $1 million to charity ?

If I had $1million to give to just one charity, which one do I choose ?

Equally, I'd love to share it between National Breast Cancer Foundation to fund research into Advanced breast cancer (ie Terminal) and Children's Tumour Foundation Australia - {purely because Sam, I and other extended family members have the genetic disease Neurofibromatosis (NF1)}

The Children's Tumour Foundation of Australia is dedicated to improving the health and well-being of individuals and families affected by neurofibromatosis (NF).

NF is not a rare disorder, it is the most common neurological disorder caused by a single gene. Find out about the facts and stats for NF here.

There are three types of NF, type 1 (NF1),  type 2 (NF2), and the lesser known Schwannomatosis. NF1 affects approximately one out of every 3-4,000 individuals.  NF2 and Schwannomatosis affect one out of every 35-40,000 individuals.

NF is characterized by the growth of benign tumours called neurofibromas. These tumours can grow anywhere in the body where there are nerve cells. This includes nerves just under the surface of the skin, as well as nerves deeper within the body, spinal cord, and/or brain.

The malignant sarcoma I had was initially a benign neurofibroma that turned malignant ; Malignant peripheral nerve sheath tumour - a rare and serious cancer . Even benign tumours can be life threatening depending on their location.

May is International Neurofibromatosis awareness month . Though I have mentioned it on my blog that I have NF1 - rarely do I in real life. It is more common than Cystic Fibrosis but I know many would never have heard of NF1 or 2.

The Children's Tumour Foundation Facebook page has been sharing NF heroes stories throughout May - Sam's and my story are coming up.
Sam at the NF family camp last September.

Thinking about the potential severity of NF gives me a spirit of darkness and can be very upsetting . Rattling my cage and freaking me out more for my little boy. It is very overwhelming, worrying about my future and that of my son especially.

I won't describe it as being depressed, but certainly my mood lately has been bleaker and it scares me.
There I said it...the anxiety slays me.

Neurofibromatosis awareness month is almost over but the awareness that I have to live with this sh*tty condition is with me everyday.

That my young son has to face this life long 'demon' too gives me a lot of grief. We keep a close watch on him .He's followed up yearly by the Children's hospital clinics. There is no cure ...yet !  

Management is a program of treatment by a team of specialists to manage symptoms or complications as and if they arise ... if .

There is a huge range of severity and manifestations even within the one family and it varies from individual to individual. (They call it variable expressivity).

I have hundreds of small nodules/skin tumours/ ugly bumps & soft lumps and freckling (skin pigmentation). As well as a newly discovered lump tumour internally near my trachea, jugular vein and thyroid. I have to get over the radiation before this can investigated further. It was found when I had a chest CT scan.

I wrote this post so that if I could bring awareness to one person /family and help them in some way then it was worth baring all.

May 18: You have $1million to give to just one charity, which one do you choose.