THE BLOG
01/11/2012 11:18 GMT | Updated 31/12/2012 05:12 GMT

Duchenne, Harrison and Me: An Interview With Harrison's Fund Founder Alex Smith

Harrison was diagnosed with Duchenne on January 25th 2011, a day we will never forget. Hearing those words, 'no cure', and 'prepare yourself for the fact that you will bury your son' flips your whole world upside down.

Meet Alex: a smiling, bouncing ball of energy, with a deep juicy giggle, a quick sense of humour, and a compassion for everyone around him. Perhaps ill-advisedly, Alex even hired me in my late teens to sell breakfast to hungry commuters, and fast became my favourite face to see in the early mornings- sorry for all the staff-priced flapjacks that found their way mysteriously into my stomach, Alex- I was a walking, talking oat.

Yet despite Alex's convivial demeanour, he carries a burden greater than most: his beautiful, cheeky chappy son, Harrison, was born with Duchenne Muscular Dystrophy, in Alex's own words 'a stinker of a disease'. Duchenne Muscular Distrophy inhibits the ability to produce dystrophin, resulting in a slow deterioration of every muscle in the body. One in 3,500 boys are born with Duchenne. By roughly 12 years old, those affected are usually reliant on a wheelchair, and will tragically only live until their late teens or early twenties. At the moment, there is no cure. These are ugly truths, that nobody would want to hear, but Alex and his wife Donna are those kinds of incredibly inspiring people who fight back. They set up Harrison's Fund with one goal: to raise as much money as possible for the world's best researchers, looking to find a cure for Duchenne. This month, they are teaming up with Fashion For Good to raise money for Harrison's Fund. I caught up with Alex to talk fashion, fundraisers, finding that elusive work/life balance.

When was Harrison's Fund founded? Was there a particular catalyst for feeling like you wanted to do more for Duchenne Muscular Distrophy than just at home?

Harrison was diagnosed with Duchenne on January 25th 2011, a day we will never forget. Hearing those words, 'no cure', and 'prepare yourself for the fact that you will bury your son' flips your whole world upside down. We probably spent 6 months coming to terms with it, crying a fair bit and trying to just get our heads into what i now describe as 'the new normal' for everyday life. We spent hours searching the internet to look at what we could do to help and gain knowledge of the Duchenne world and were not impressed generally with what we found in the UK. There was a real lack of hope being portrayed by organisations which we felt was wrong and just didn't sit well with us, we just believed there was and is a better way. The decision to start a charity came in August 2011, a life changing moment, we were at the coast in Dorset, our whole extended family around us, discussing our idea of getting into the not for profit sector, and the message from them was clear, "do it, we are behind you and will stand with you wherever it takes you" We now felt like we were doing something, we were not going to stand around and watch our son waste away before our eyes, we were going to effect profound change. We launched on Jan 1st 2012 at 00:00:01 whilst celebrating a New Year.

What have been your greatest challenges and rewards so far?

To be honest nothing bad has happened, the worst is probably Andy Murray the tennis player saying no to being our patron, he lives a mile away from us and his management said he was too busy. Getting celebs to get behind us is very challenging, Duchenne is not high profile yet but still affects so many families every year. I'm looking today at a full page advert from Scottish Power promoting the fact that as a company they have raised over £1 million for Cancer Research UK. They deserve congratulations for this because as we know, cancer affects 1 in 3 families in the UK and is probably the most "high profile" disease in the UK if I can put it that way without causing too much offence.

But, and I speak here as somebody who has lost many of my family to breast cancer, what about those smaller charities for whom '£1million raised so far' would be a game-changer in terms of paying for research into finding a cure for a "less high profile" disease.

Harrison's Fund is a UK registered charity committed to funding research to find a cure for Duchenne Muscular Dystrophy, the world's most common genetic killer of children, yet 99% of people will never have heard of it. Currently there is no cure, there are no 'winning the battle' stories, it is 100% fatal for sufferers by their late teens or early twenties.

The greatest reward has been the progress we are making on the research with the help if all the other charities in the Duchenne Alliance. www.duchennealliance.org It is an amazing group, 40 charities, globally working together for a common goal. It has never happened in history, it is a first and i am so proud to be a part of an organisation that will one day change the world, just a little bit.

How much does Harrison know about the work you do for him and other children with Duchenne?

Harrison is aware of the 'My fund' as he likes to put it and understands that it is to try and help his 'poorly muscles' but does not yet understand quite how hard we are working to help children like him. I hope one day, when he is older and we have made Duchenne part of history, to sit down with him and take him through the journey. I hope it makes him proud to be a part of it. My greatest fear is that 'if' i am not successful in changing Duchenne, Harrison, at the end, will look up at me and ask, 'Daddy... could you have done more?'

How on Earth do you juggle working in the voluntary sector with work and home life?

To be honest I'm not sure i do Juggle them particularly well, i would definitely be a failed clown! What I try to do is work hard on each in turn whilst maintaining the other two. Not always ideal but the best i can come up with at the moment...I hope to go full time on the charity at some point but this really is dependent on securing some kind of philanthropic support/sponsorship from a company or individual that believes in me.

What are your ultimate goals for your work with Harrison's Fund?

My ultimate goals are split in two really, the race time for me is 10 years, 10 years to affect profound change and take Duchenne from a 100% fatal condition as it is now to a 'chronic manageable condition'. This will give us the time to allow science to catch up and take in part two which is finding the cure so that no family will lose a son or daughter to Duchenne.

Do you meet many other children and families dealing with Duchenne? What's the best advice you've been given?

When we first received Harrison's diagnosis we took to the internet, to forums, advice pages, charity websites. For me all i wanted to do was to speak to another family with a son of similar age to Harrison. We were really lucky to be contacted through an online forum by a family who live nearby with a son the same age as Harrison. It is invaluable meeting other families with Duchenne and similar challenges in their lives as it is only them who truly understand what we face daily. I now get regularly contacted by families who are newly diagnosed and meeting familes together with my own has become a huge part of our lives.

What lead you to fashion as a potential fundraiser?

We are working with a partner on the fashion show, who have organised everything. The team at www.fashionforgood.co.uk support a number of local charities as well and are an incredibly inspirational group. The event takes place over two days on the 9th -10th of November, with a red carpet event on the friday evening, celebs, VIP's and OK Magazine are heading down for the catwalk show and boutiques from London and Surrey. The Saturday event is completely free entry so really shouldn't be missed!

How do you mastermind these things?! Does it get very stressful?

It is certainly stressful, but it kind of becomes normal, when you are as passionate about your cause as i am, it no longer becomes work, it becomes everything that you are and believe in. Charities are built on their volunteer network, a fact it took me a while to appreciate. Without the volunteers nothing would get done or at least it would but far too slowly. We set up comitees and steering groups for any given project and let them run with it whilst still keeping a handle on the 'brand' aspects of the charity.

And last but certainly not least- will Harrison be making an appearance on the catwalk?

I think Harrison would make a pretty good catwalk model, he is certainly fearless and can throw one hell of a killer smile but unfortunately he will be heading to his bed as always around 7pm. I'm sure he is going to want to get involved more as he gets older so we will certainly include him more as the opportunities arise.

If you want to find out more about Duchenne Muscular Dystophy, Alex and Donna's mission, their fashion show or how to donate to Harrison's Fund, you can visit www.harrisonsfund.com