Saracens and Duchenne UK: William's Story
19th November 2019
William Eames will walk out onto the pitch at Allianz Park alongside his grandfather Peter Godfrey to deliver the match ball ahead of kick-off.
William was diagnosed with Duchenne Muscular Dystrophy (DMD) in January 2016 at the age of three. His parents Jo and Matt had grown concerned after seeing William struggle to walk up stairs, and after referrals and assessments, a blood test confirmed that their son had DMD.
Speaking to Saracens, Jo said: “As a family we were very shocked. We were heartbroken. Life wasn’t what we thought life was going to be. Your whole family, your extended family, are grieving for you and William as well.
“When they’re first diagnosed, you do Google unfortunately. You get the worse case scenario which says very unlikely to live into their 20s. You just get the very hard facts that don’t really explain to you that Duchenne actually effects every child quite differently.”
DMD is a devastating muscle wasting disease and almost always affects boys, with around 2,500 affected in the UK and around 300,000 affected worldwide.
William started using a wheelchair last year to help him get around but is still very active including taking part in his school sports day and doing Riding for the Disabled.
“There isn’t a cure at the moment. I’m not a medical person, I can’t find a cure for Duchenne, but I can try and make William’s life as great as possible.”
The Eames family have also received tremendous support from local businesses in completely renovating their house to make William’s life easier.
More than 20 business threw their support behind the project to ensure that their house could become fully inclusive for William.
“We moved into a three-bedroom house that had very irritating steps. Watching William walk around the house and having to hold onto the side and pull himself into the front door and help himself down onto the toilet.
“All of these little steps made a big difference in his life.
“I think when you have something like this you have to understand that if people offer to help, you have to accept people’s offering.
“Everyone just giving their bit has meant that this big build has been able to be done.”
Saracens launched their two-year partnership with Duchenne UK in September 2019. Jo is full of praise the work of Duchenne UK and is excited at the partnership between the charity and Saracens.
“Duchenne UK have just epitomised what a small charity should do and can do. As a parent of a child with a life limiting condition that has no cure you want someone knocking on the door of every scientist going, knocking on the door of everyone raising funds, raising money, trying to put all of that into a concerted effort to finding a cure.
“They are trying to find a cure for all of our boys, they are putting so much money into medical science.
“Saracens are such a community. It’s so fitting for me that Saracens, who my dad is a huge fan of, have chosen a charity that is so close to our hearts.
“We are all so excited about the game on the 23rd. For William to be given this opportunity is great. He will have the biggest smile on his face the whole time.
“We’re just very thankful that Saracens are doing what they’re doing with Duchenne UK.”
William will be joined on the pitch by his grandfather Peter Godfrey. Peter is a long-time Saracens supporter since the club’s days at Vicarage Road.
“Saracens is a club that is a rugby club but it’s so many other things as well.
“The fact that Saracens has chosen to support Duchenne UK is fantastic and absolutely wonderful. Hopefully it will do an awful lot to widen knowledge in the world as a whole of this disease which is pretty unknown.
“It’s going to be a fantastic day. William will enjoy it; I will enjoy it and the whole of our family will enjoy it as well. I just want to give Saracens a great big thank you for doing this and doing it for Duchenne UK.”
To make a donation to Duchenne UK, please visit: https://www.duchenneuk.org/donate/saracens/ or text ‘TACKLEDMD’ to 70085 to donate £10. This costs £10 plus a std rate msg. Alternatively, you can opt to give any whole amount up to £20.
NOTES FOR EDITORS
What is Duchenne Muscular Dystrophy?
Duchenne muscular dystrophy (DMD) is the most common fatal genetic disease diagnosed in childhood. Children born with DMD cannot produce the protein dystrophin which is vital for muscle strength and function. Muscle weakness starts in early childhood. Many use a wheelchair by around the age of 12. As deterioration continues it leads to paralysis and early death, often in their 20s. It almost exclusively affects boys. There is no treatment or cure. In the UK there are around 2,500 boys affected and around 300, 000 worldwide. It is classified as a rare disease.
Who are Duchenne UK?
Duchenne UK is a lean, ambitious and highly focused charity with a clear vision: to fund and accelerate treatments and a cure for Duchenne muscular dystrophy.
We are investing millions of pounds in research right now to bring treatments and a cure to help this generation. Duchenne UK is the largest funder of DMD research in the UK. We are also committed to accelerating the pace of research. 90p in every £1 raised is committed to research.
Our president is HRH The Duchess of Cornwall. Our patrons include the broadcasters Krishnan Guru-Murthy and Mary Nightingale, and the sports stars Owen Farrell, Kris Radlinski and Andy Farrell.
We need your help, because we need to keep funding promising new research.
How to donate?
Duchenne UK is entirely reliant on donations to fund research for treatments and a cure to DMD. This can be done via:
- Direct Debit – Duchenne Direct
- Individual Donation – Donate
- If you are a family or friend affected by DMD you can set up your own fund with Duchenne UK – Family and Friend Funds
- Take part in one of our fundraising events – Events
- Text DUCHENNE to 70085 to donate £5. This costs £5 plus a std rate msg.
For more information visit www.duchenneuk.org
Published on 19 November 2019Share this article Categories Personal stories