Marc "Human Dustbin" Daly
Weight Loss Challenge
Marc will run a personal weight loss programme over the next few weeks, He will be attempting to lose a HUGE 5 Stone in body weight. Although Marc wants to do this in aid of Alec, He has a strong desire to get fit and healthy for not only himself, but his family to. Marc has two boys himself and as a family man, feels a connection to Alec's cause and his plight.
Marc's challenge will begin on the 13th Jan 2016 and will run right through to the 6th July 2016
You can either sponsor Marc for the over all event here on this giving page or contact Marc Directly to sponsor him Per lb lost in a week period or over the full term. You can find Marc on his Facebook challenge page:
On the surface, Alec Syphas is like any other 5 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.
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.