A Duchenne Muscular Dystrophy awareness and fundraising page in aid of Alec Syphas, a super heroic little man battling DMD.
“A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles.” – Chr...istopher Reeve
On the surface, Alec Syphas is like any other 6 year old: full of imagination, mischief and adventure. Alec loves Superheroes. They play an active role in his imagination, and they are the perfect metaphor for his life. Alec is fighting a big super villain: Duchenne Muscular Dystrophy (DMD). This degenerative disease challenges him every day, hour and minute. He fights back hard. Some days he succeeds and some days he doesn’t, but he always gives his all in the daily battle to succeed at the simple everyday tasks that come so easily for the rest of us.
Alec was born in Sheffield, UK on the 27th June 2009 to Rachel Hanson and Roy Syphas. Being born three weeks premature, he came into the world fighting and grew into a seemingly fit, happy and healthy baby boy, but in 2014 he had to start fighting all over again.
When Alec reached the age of four, Roy and Rachel were concerned that his mobility skills were not developing the same as his friends, so they had some tests done. The results were not good. Alec was diagnosed with Duchenne Muscular Dystrophy. DMD is a life-shortening muscle disorder with no known cure. It affects every one in three thousand six hundred boys and is often diagnosed between the ages of three and six. It is a progressive muscle disorder that limits the average lifespan to just 20 years old.
Alec is currently struggling to climb stairs, run, walk long distances and has started to use a wheelchair to enjoy days out.
Duchenne Muscular Dystrophy
Early symptoms of DMD include enlargement of the calf and deltoid muscles, low endurance levels, struggling to ascend stairs and walk or run with confidence. By the tender age of 10 , children suffering with DMD require assistance with walking aids and braces. By 13, most will be reliant on the use of a wheelchair. As DMD spreads through a child’s body, other areas become affected: arms, neck, and breathing difficulties, are a definite occurrence. These combined difficulties eventually lead to paralysis and death.
Steroid treatment will help to extend the length of time Alec will stay on his feet under his own strength, as well as improve the quality of his too-short life. Treatment will also delay the inevitable reliance upon a wheelchair by a year or two. Sadly, there is no treatment available to extend Alec’s life expectancy.
The Friends of Alec Syphas
The Friends of Alec Syphas has been created for three reasons. Firstly to help Roy and Rachel provide Alec with the best quality of life he can get, through fundraising events, donations and other forms of support. Secondly, to raise awareness of DMD. By sharing this information, we hope we are educating you about this terrible disease and you will help us inform others by sharing our posts on Facebook, Twitter and other social media platforms. Lastly, we want to help other sufferers of DMD by providing a percentage of our fundraising to a select group of charities that have either helped, or will help Alec during his lifetime. These charities are:
- Rest & Respite Activities
- Bluebell Wood Hospice (www.bluebellwood.org)
- Muscular Dystrophy Campaign (www.musculardystrophyuk.org)
Some ways you can help us to help Alec and his selected charities
- Read our posts and find out more about Alec, Roy, Rachel and their life spent battling DMD
- Like this Facebook page and ask others to Like it as well
- Share this page, and articles on this page, on Facebook, Twitter and other forms of traditional and social media outlets
- Tell your friends about The Friends of Alec Syphas - the more friends the better
- Donate from as little as £1.00 to Alec’s gogetfunding page at this link: https://gogetfunding.com/friends-of-alec-syphas/
- You can organise a fundraising event in aid of the Friends of Alec Syphas and the charities that we support
- Help support other fundraising events in aid of The Friends of Alec Syphas
- Share ideas that will help us to raise more awareness, more funds, and the quality of life for Alec
When they’re not battling for good against evil, superheroes adopt a a secret identity that allows them to live an ordinary life Alec’s life is anything but ordinary, so he has to stay in superhero mode throughout most of the day. He smiles, laughs and fools around despite the pain, always pretending to be one hero or another. Not realising that he is the real hero, battling a very real villain.
Thank you for taking the time to read this introduction, we hope that you will join our superhero team and help Alec Syphas fight DMD.