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Hello, an explanation and an appeal.

Hi everyone,

My name is Matt Wilson, I am 35 years old, married with a 16 month old son and live in Cambridge, England. I am an Airline Pilot.

In April 2008 I was diagnosed with a very rare form of Leukaemia called Chronic Eosinophilic Leukaemia (FIP1L1-pdgfra 4q12).

So, why am I posting on the CML forums? Well,it appears CEL is so rare that it is being learned about, bit by bit by Doctors, Science and Patients. It used to be classed as Hyper Eosinophilic Syndrome.

However, it is very similar to CML in it's symptoms, treatment and outlook.

I was treated privately at first, through my Airline's medical scheme. However, that is now exhausted and I am in the process of transferring to the Cambs NHS. They have, however, refused so far to pay for my ongoing treatment due to CEL not have NICE recommendation for the drug that has saved my life.

I am talking about Glivec of course. I take 200mg a day and am in Complete Molecular Remission.

I have regained my flying Medical and have in fact just been promoted to my first Captain posting. Amazing, considering the alternative.

Anyhow, enough of that.....

Why an appeal? Well, I'm not appealing for help in getting Glivec. I'm a realist. I'll get it somehow or somewhere.

What I need help with is this:

Sunday 26th July, I along with 10 friends are riding from London to Cambridge (69 miles!!!).

We are riding for 2 charities that many of us will know of:

Leuka (Hammersmith Hospital Charity)

Geoff Thomas Foundation, to help raise the 20 Million Quid Geoff needs to fund 6 clinical trials centres into Leukaemia and Blood Cancers. London, Birmingham, Nottingham, Manchester, Oxford and yes, you guessed it, Cambridge.

We have an aim of 5000GBP to raise between 11 of us. I am about 1500 GBP online and 1000 GBP offline. I hope the others are doing their bit too!!

Can you help us by visiting either:

www.justgiving.com/geoffthomas-londontocambridge

www.justgiving.com/leuka-londontocambridge

Sorry to beg, but this is such a good chance for us all to make a massive difference!!!

I feel very, very lucky to be doing so well. I want to help others.

Thanks a million.

Matt

Hi Matt,

Have you looked at the PDF file to the left of the screen on the home page? Headed Treatment We Need. I have recently won my case with the local Primary Care Trust using the advice in the document, plus help from the writer via email. Also enlisted help from GP and MP. If you want to tap into my experience please just ask.

ATB with the ride, sorry not to sponser you, but have just sponsered daughter and friend in other events.

Happy riding!

Pennie

Hi Matt, I hope your sponsored ride went well and you are recovering from your exertions. I have stopped taking Glivec since April 2009 and now take Dasatinib. Regards Maria