Shelley Simmonds
Fraser & Friends
Fundraising for Action Duchenne
Story
www.facebook.com/fraserandfriends
On 19th February 2014 our lives changed forever when we were told our beloved son Fraser, 11 months old at the time, had Muscular Dystrophy, after a simple blood test showed he had an exceptionally high CK level. We knew there was ‘something’ as Fraser was not meeting his physical milestones, but we never expected something quite so serious. A little brother to a healthy then 2 year old sister, we hoped Fraser was just a typical ‘lazy boy’ – sadly nothing could have prepared us for the news that was to come.
A blur of appointments at Great Ormond Street Hospital followed for 8 long months, until we heard the words “it’s Duchenne”. The most common Muscular Dystrophy, yet the most severe - a life-limiting muscle wasting condition, affecting 1 in 3,600 boys and 1 in 50 million girls - which currently has no ‘for all’ treatment options and no cure. A condition which has robbed our son of the ability to walk, one which will lead to eventual paralysis and one which has an average life expectancy of 25 years.
For a long time our hearts were shattered and we didn’t think we would ever be happy again. But with time comes acceptance and you can either let something like this destroy you, or you can rise up, face it head on and fight it. And that’s what we have done ever since. Amidst the chaos and the heartache, we have united with the most incredible and inspiring human beings along the way, all fighting a similar mission - all of whom have touched our lives irrevocably and drive us forward for a greater good.
On 19th February 2014 our lives changed forever when we were told our beloved son Fraser, 11 months old at the time, had Muscular Dystrophy, after a simple blood test showed he had an exceptionally high CK level. We knew there was ‘something’ as Fraser was not meeting his physical milestones, but we never expected something quite so serious. A little brother to a healthy then 2 year old sister, we hoped Fraser was just a typical ‘lazy boy’ – sadly nothing could have prepared us for the news that was to come.
A blur of appointments at Great Ormond Street Hospital followed for 8 long months, until we heard the words “it’s Duchenne”. The most common Muscular Dystrophy, yet the most severe - a life-limiting muscle wasting condition, affecting 1 in 3,600 boys and 1 in 50 million girls - which currently has no ‘for all’ treatment options and no cure. A condition which has robbed our son of the ability to walk, one which will lead to eventual paralysis and one which has an average life expectancy of 25 years.
For a long time our hearts were shattered and we didn’t think we would ever be happy again. But with time comes acceptance and you can either let something like this destroy you, or you can rise up, face it head on and fight it. And that’s what we have done ever since. Amidst the chaos and the heartache, we have united with the most incredible and inspiring human beings along the way, all fighting a similar mission - all of whom have touched our lives irrevocably and drive us forward for a greater good.
We see life through different eyes now, better ones. We realise the small things are the big things and we have an overarching desire to make a difference for our son and others like him - to change society’s perceptions of disability, inclusion and accessibility. We want to educate people about what life is really like living with a rare disease - we share the highs, the lows, the seriousness... and all the fun bits in between! Life is what you make it and a different normal doesn’t have to mean doom and gloom. Different doesn’t have to mean less!
We want people to hear about Duchenne, to understand it and to raise awareness. We want to continue to fund research and projects that will benefit our community - please support us in any way that you can - we need you. Together we really can build an army and make a difference - and we thank everyone that continues to stand by our side and helps us to do this.
We want people to hear about Duchenne, to understand it and to raise awareness. We want to continue to fund research and projects that will benefit our community - please support us in any way that you can - we need you. Together we really can build an army and make a difference - and we thank everyone that continues to stand by our side and helps us to do this.
The Simmonds Family
March 2018
March 2018