Hi & thanks for visiting my JustGiving page,

after trying to get into the London Marathon for the last 4-5 years, I have finally been accepted - HOORAH - I think!!

I am raising funds for 2 charities - Helen & Douglas House & The Batten Disease Family Assoication.

My reasons for wanting to raise money for 2 such great charities are my 2 beautiful daughters, Misha & Natalie. 

Having both been healthy, vibrant girls, full of fun & mischief, as parents, my wife Rachel & I were devestated to find out the girls had Late Infantile Battens Disease. Battens is an inherited  rare, genetic, progressive, neurodegenerative   metabolic disease, that occurs in children & adults worldwide.

To put it more simply, all the skills they learn are taken away from them as the disease progresses. There is currently no known cure & the disease is always fatal. To watch our girls go from bundles of mischief & fun to watching them loose the ability to walk, talk, eat & see between the ages of 3 & 6 was the end of our world. Misha died in November 2002 aged 7 and Natalie died in December 2003, just before her 6th birthday.

Fortunately, there were several charities that came alongside us at the time - we would love to fund raise for them all!

Helen & Douglas House became our sanctuary. We were shown love without limits & a place where we could just be. We were taken care of completely as a family & were able to enjoy the space & peace of the hospice. The care for Misha & Natalie towards the end of their lives became 24/7 care & the nurses at the hospice took on most of this too while we were there. The only other people who truly understand what you're going through at such a tragic time, are other parents whose children have died or are dying.

We made many friends there & I am humbled & privelaged that so many still are. To just be able to stop, catch your breath & recharge your batteries to face the outside world again was a priceless gift. Sister Francis who set up the hospice is truly amazing & I am proud to call her a friend.

The Batten Disease Family Association has been a source of imformation & practical support on how to care for a child with Batten Disease. We have found friends here also & through getting to know families with affected children, we were able to have an understanding of the journey ahead for us, both before & after the deaths of Misha & Natalie. It's a small charity with a big heart.

Because the disease is still so rare & so few families are affected (only approximately 1 in 30 000 births), raising awareness is vital. The charity also provides funding into research to finding a cure, so that there may be a day when families don't have to see the lives of their children robbed by such a cruel disease. 

Hopefully the blisters, aches & pains will be worth it, I'm only going to do this once!

Please give generously - I want to raise as much as I possibly can.

If you would like to know more about the charities, please click on the following links.

Thanks for taking the time to visit my JustGiving page.

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