Alec Syphas already knows he isn’t like the other children in his class. While his classmates are getting stronger and more confident, the six-year-old struggles to keep up with them in the playground.
Like other kids his age, he is full of imagination, mischief and adventure but every single day, the little boy who adores superheroes, wages war against the big super villain in his own life: Duchenne muscular dystrophy.
Alec, who lives with mum Rachel Hanson and dad Roy Syphas, in Hemsworth, Sheffield, was diagnosed with the muscle-wasting disease last summer and, one day, too soon, it will end his life.
But right now, Alec still has plenty of life ahead of him and his family and friends are determined to make it the very best it can be.
That is why a team of 11 people, all from within Alec’s inner circle, have joined forces to concentrate on raising funds to help buy equipment for Alec that will become vital to him as his body fades. They are raising awareness of Alec’s disease, and its limitations – particularly among Alec’s classmates at Woodseats Primary School.
Together, this team of people has become known as ‘Alec’s Avengers.’
“Alec loves superheroes,” said his mum, Rachel.
“After Alec was diagnosed last summer, we struggled to come to terms with his prognosis; it wasn’t a disease we’d even heard of before this. People around us started coming together to run marathons in his honour, so many took part in different charity and sponsored events to help raise money and awareness on Alec’s behalf.”
And Rachel, aged 43, who works as a programme officer at Sheffield Council, says Alec is the biggest superhero of all.
“When they’re not battling for good against evil, superheroes adopt a secret identity that allows them to live an ordinary life,” she said.
“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.
“This degenerative disease challenges him every day, hour and minute and 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.”
Alex was born prematurely in 2009, but seemed to be a perfectly healthy little boy, until he reached the age of four and his mum and dad became concerned that his mobility skills weren’t developing the same as his friends.
Tests were carried out and Alec was diagnosed with DMD, a disease that affects one in 3,600 boys in the UK. Early symptoms of DMD include enlarged muscles, low endurance levels, struggling to climb stairs and walk or run with confidence.
By the age of 10, children suffering with DMD generally 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, including arms and neck, and they can suffer breathing difficulties.
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.
But it isn’t all bleak news. Until recent years, most men with DMD didn’t make it past their 20s, but thanks to advances in cardiac and respiratory care, survival into the 30s and, in some cases, 40s and 50s is now possible.
Rachel said: “Alec doesn’t understand everything, of course, he’s too little right now. He knows he has poorly legs and that he can’t keep up with his friends and he gets frustrated sometimes.
“This year we’ve decided to work with staff and Alec’s teachers at Woodseats Primary to educate his friends and classmates about Alec’s condition.
“Duchenne Awareness Day is today and his whole school is wearing green for the day, to raise funds and show their support. Alec doesn’t always enjoy the extra fuss that comes with his disease, so we hope that by educating those around him as to what the disease means for him, it will all be clear and answer all their questions so that they can get back to treating him just like anybody else.”
‘Alec’s Avengers’ have made it their mission to raise the funds to pay for research that will further treat and, one day, cure the disease. But Rachel says she has had to accept that won’t happen in Alec’s lifetime.
She added: “Me and the rest of Alec’s Avengers won’t rest until we’ve raised as much funding and awareness as we need to in order to make a difference. I know that a cure won’t come in time for Alec, but I want to make sure he has everything he needs to live as long and comfortable a life as possible. The money we raise will pay for breathing apparatus, moving and handling equipment and a wheelchair when they’re needed. It gives us security, knowing those things are there for when we need them, so that we can forget about it and just get back to enjoying our little boy.”
Visit www.gogetfunding.com/alecs-avengers to sponsor Alec’s Avengers on their next mission.