Dom's page

Dominic Sharman is raising money for Prader-Willi Syndrome Association Uk
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London Marathon 2019 · 28 April 2019 ·

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Story

Thanks for taking the time to visit my JustGiving page.

On 27th January 2018, our little boy, Leo Lewis Sharman came into the world as a very poorly baby. He spent the first month of his life in the Special Care Unit; during this time, he had many tests to try and figure out what was wrong but everything came back inconclusive, so we were sent home with no idea what the future held for us and Leo.

4 months later and after countless hospital appointments and sleepless nights, we finally received a diagnosis; Leo has a rare genetic condition called Prader-Willi Syndrome (PWS) and there are only around 1500 people with it in the UK. 

PWS is a very complex condition that is difficult to summarise, but it is characterised in babies by very low muscle tone which will affect all of Leo’s developmental milestones – he still doesn’t have full head control, he isn’t able to cry and he is yet to sit up. Although he is now eating purees, he still takes his milk through a tube in his nose. Usually, after the age of around 4, children with PWS will stop feeling full so can be constantly hungry which, if left unmanaged would lead to obesity and all of the health complications that come with that. It’s going to be hugely important for us to manage this very carefully with a good diet, exercise and educating Leo on the importance of it for him to make sure that his weight is kept under control. Most people with PWS also have mild to moderate learning difficulties and require a lot of additional help throughout their lives.

Having such a poorly baby was something that threw our world into complete darkness and despair; Maria and I struggled to cope with everyday life and we felt totally overwhelmed by the journey ahead of us. We both endured a deep depression and at times didn’t know whether we had the strength to carry on - I guess we were going through a grieving process but eventually with the support of our friends and family and an amazing charity called PWSA, we were slowly able to come through to the other side. The PWSA really helped us with up to date information on the condition and possible treatment therapies, as what exists online gives a very bleak outlook. They gave us contacts of the leading consultants in the UK who specialise in this rare condition and I think most importantly, they put us in touch with a wide network of other families living with PWS; being able to have people that totally understand what you are going through has been invaluable and we’ve been so encouraged to see them and their children thriving with the right education around this condition.

We are now in a much better place - we’re positive and focussed on doing everything we can to give our son the best life possible, we have high expectations for him and want to do whatever we can to help the PWSA continue to provide the vital support they offer to families like ours.

I have been lucky enough to win a place in the 2019 London Marathon to proudly represent this wonderful charity which means the world to me.  I am hoping that you can help by sponsoring me to get my not inconsiderable bulk around the world-famous course in April. I have never run a marathon before, but I am relishing the challenge. My mental health has been all over the place this year and the exercise is helping so much. Every day when things are tough, instead of reaching for a bottle of wine, I am reaching for my trainers to get out there and put one foot in front of the other. With each step or when things begin to get uncomfortable, I just think about that little boy of ours and all the challenges that he will have to endure in his life and then I just grit my teeth and try to carry on. 

Thank you so much for taking the time to read my story. I’m sorry it’s become so epic, I just really wanted to explain how important this is for me and I would be forever grateful for whatever you can do to support this cause.

Lots of love,

Big Dom

 

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