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A bit of a long one but here goes.....
As most people are now aware, I have Huntington's disease. The last couple of years have been tough, but we try to stay as positive as we can. We live life as normal as is possible and try to make the most of everyday and everything that we have.
Huntington's has been described by experts as a cruel combination of Motor Neurone disease, Parkinson's disease and Alzheimer's amongst other mental illnesses.
It isn't easy and we face many challenges, living every day knowing you have a terminal illness is crushing. I have bad days, sometimes bad weeks already, dealing with some of the early symptoms of this illness.
As there is currently no cure for Huntington’s, I do participate in regular research at St Marys, as scientist across the world, work hard to find a cure.
The Huntington Disease Association has supported us over the last 2 years, since we were referred to them by my consultant at St Mary’s Hospital.
Debra Robinson became my HD Specialist Advisor. Debs has provided support to me, my family, friends and my colleagues. Being able to offer advice specific to my condition and make us realise how important it is to prioritise certain things in life is priceless. Everything from helping us understand what damage Huntington's disease does to certain parts of your brain to preparing us for what is coming in the future and how we can try to get things in place for certain changes that will affect our lives, both at home and at work.
Debs has been sat with me during difficult conversations at work. She even provided information sessions to my manager, HR and my staff to help them understand this disease better.
I am very proud of my achievements whilst at Manchester United and my progression within the Foundation over the last 10 years especially. Heading up a successful girl’s programme has kept me on my toes. This provides me with different challenges every day without throwing Huntington’s into the mix too. I manage a team of 23 staff and also oversee the development of a small team of female volunteers as we look to support the next generation of female coaches. There is a lot of experience within the team, some fantastic people, lots of different personalities and plenty of work to keep me busy. Everyone who knows me knows how passionate I am about my work. So having to come to terms with taking my foot off at times and stepping back when I need to, hasn’t been easy.
What has made me finally realise that work isn’t the most important thing here?
My beautiful daughter Phebe. She is what is most important and I now have a much better work life balance, which enables me to spend as much time as possible with my rascal. I always knew that I needed to be with my daughter more, for example during the school holidays, but when you have a role that is full time and so busy and expanding at a rapid rate it is not easy to discuss not being around as much. Debs from HDA working alongside the management at the Foundation have made adjustments to my work, so that I now have the support and flexibility to spend as much time with Phebe as possible, making special memories along the way, whilst still managing my programme at work.
During the summer of 2018 the HDA asked my manager and I if we would take part in an interview for the magazine to show the way that we have all worked together to keep me at work during a tricky time. The link is below for anybody who wants to read the story that was printed.
The Huntington’s Disease Association funds 23 full time specialist advisers across England and Wales, helping people live well with Huntington’s. Support take many forms and is tailored to need.
So, I wanted to give a little back to the HDA, I was thinking about different ways to increase awareness of the disease and the charity, whilst raising some much needed funds for this small but amazing charity. In the New Year I sent a message out to a few friends to see if anybody fancied running the Manchester 10k with me in May. Within 2 days I had 35 people confirm that they wanted to take part – unbelievable!
I already had a friend of mine Chris Bowcott committed to running the Manchester Marathon in April and a 10k warm up in Brighton with one of my brothers so this turn out has blown me away. We are now training to complete the Manchester 10k on 19th May…we want to raise £10k for HDA!!!!
As you will have noticed I have put a few pounds (I mean stones) on over the last 18 months. This is a big adjustment for me as I have always been really fit and running 10k would never have involved additional training really on top of my football. The weight gain is a side-affect to medication that I now have to take daily to help manage some of the symptoms of Huntington’s, not ideal as I will have to take these for the rest of my life but I suppose putting on a bit of weight is a small price to pay for feeling better. Having spent the last 27 years eating anything I wanted…mostly junk, I am now trying to eat a little healthier and get out running 3 or 4 times per week. I am up to 5k now so only got to double that – easy haha.
Thank you for taking the time to read my story.
All donations will be gratefully received, many thanks, Em xxx
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