Friday, 19 August 2011

Desmoid Tumour Research Foundation ...

On Sunday 23rd Oct 2011 come rain or shine
A Fun Run~ Running for Answers.
Will take place in Fairmount Park Philadelphia PA
Organised by Desmoid Tumour Research Foundation: In aid of Fibromatosis Desmoid Tumours...  

In 2009 my family received terrible news... When you’re told your child has a tumour, you instinctively take it that the tumour is cancerous and your world begins to fall apart...  We were referred to a specialist hospital over a 100miles away and after a consultation, a thorough examination and a rather difficult biopsy we waited for what seemed like forever.

The verdict was in... ~ Benign ~ I almost passed out with the joy of pure relief... Fibromatosis ~ a name was thrown down the telephone,  but I was too busy laughing and hugging my beautiful girl and thanking god and the consultant ~ it’s going to be ok I told her, it’s going to be ok...
How wrong I was... 2011 after one extremely invasive operation and god knows how many trips backwards and forwards to the specialist hospital... my girl decided after a final consultation and the distressing news, she was going to lose her arm ~ she quite rightly wanted a 2nd opinion.

I won’t go on or into details, except to say she’s been referred to ‘Christies Cancer hospital’ (despite it not being a Cancer) the hospital advised it would be treated like a cancer and a treatment plan has been put into place... I delicately share this very personal experience with you, because my beautiful girl is now fighting something we all call the Beast... The tumour is an aggressive ‘Fibromatosis Desmoid Tumour’ a rare tumour, that is hell bent on staying. It clones itself in an attempt to protect her from an injury she received in 2009... Resulting in scar tissue which has gone out of control and DNA’s become involved... Throughout this nightmare journey, she’s been brave, strong and dignified and because of her own research, she came into contact with a page on facebook called!/groups/desmoidtumorRF/  On the day she found this group I’ll never forget the relief in her voice as she said, “Mum I’ve found others with my condition”... I wont discuss statistics, but just to say, this is a rare tumour... I’m not a professional or a person with medical knowledge, I’m a really scared mum who half the time feels completely lost, due to the past few years of groping around in the dark, frantically trying at times to make it better for my girl...

However along the way I have learned the Dr’s, consultants and Specialists etc. have different viewpoints, but they all seem to agree on one thing, unfortunately it’s a lifelong condition and something no one seems to know very much about... The Fibromatosis Desmoid Tumour group gain strength and support from one another, we all keep in contact, helping one another in as many ways as we can... but we desperately need your help, support and a positive connection, which, is one of the reasons why I and others communicate incessantly through Twitter & facebook to get the message out, to raise awareness as well as fundraise for research, a much needed cure and as many treatments as necessary...  A ‘Fun Run’ called ‘Running for Answers ‘ has been organised by Desmoid Tumour Research Foundation which is based in America.

Anyone can go to the link (below) quickly and easily, donate as little or as much as you like... As well as this being a personal account it also asks graciously, if you could help ~ I more than anyone knows the state of some finances in households right across the globe, but if you can't donate please dont worry, instead, help spread awareness so that this condition gets the recognition and support that it rightly deserves... We regularly tweet about it on Twitter.... @Fibromatosis & @angeljane01

Here’s the link if you wish to DONATE...  every single donation goes directly to (Desmoid Tumour Research Foundation)
I pray hard that someone, somewhere will one day be able to help us get-rid of this awful condition and loved ones will be saved from aches, pain, discomfort and the uncertainty they face each and every day...

Obviously we would like to collect more but The goal: $1000 ~ To date we are 61% towards that goal... Can you please help?

If you’d like to know more:

Angel and the gang Thank you :)