Fulham dad urges cake connoisseurs to Bake a Difference to help son, 6, with Duchenne Muscular Dystrophy
As Bake Off fever grips the nation cake connoisseurs are being urged to put their skills to good use at a ‘Bake a Difference’ tea party next month to support a special boy from Hammersmith and Fulham.
Sammy de Laszlo looks like any other six-year-old, obsessed with cars and happily chasing his elder brother Thomas around the parks near their Parsons Green home.
Watching the children playing you might notice that Sammy struggles to keep up with his nine-year-old brother, because behind his cheeky grin lies a severe health condition.
Sammy has Duchenne Muscular Dystrophy, an incurable genetic disorder that causes severe muscle wasting as the body can’t produce dystrophin – an essential muscle-building protein.
His family have teamed up with Tinies Childcare to organise ‘Bake a Difference’, a tea party to raise awareness of the condition that affects 2,500 children in the UK.
Budding bakers in families, businesses and more than 5,000 schools are invited to hold a fund-raising Mad Hatter Tea Party on October 9, which coincides with the 150th anniversary of Lewis Carroll’s Alice’s Adventures in Wonderland.
Sammy’s dad, Oliver, recalls the day his son was diagnosed: “It was Easter 2012, it is etched in my mind and still haunts me to this day.
“While families were surrounded by Easter Eggs, we were at Chelsea and Westminster Hospital getting the results from a previous test.
“I remember thinking and saying to my wife Tricia that it will be fine as being a Bank Holiday the labs will be closed and the results won’t be ready.
“How wrong was I? Within 20 minutes we were walking out of the hospital with the devastating news of his diagnosis.”
The family met with Great Ormond Street two days later and began what Oliver described as ‘a long roller coaster’ of treatments and hospital visits.
Oliver revealed he and his family have been ‘blessed’ by the support they’ve received from the army of physiotherapists, clinicians, speech and language therapists and school support workers who have helped Sammy, and his family, cope with his condition.
“Watching Sammy’s development is like any parent watching their children develop, fantastic! He’s incredibly determined and a little fighter,” said Oliver.
“Sammy is able to do a lot more than he was a year ago, things like climbing on a climbing frame in a playground are often taken for granted.
“However Sammy was not able to do this until a year and a half ago without the help of his course of steroids.
“This helps to prolong his mobility and has allowed him a chance to experience these everyday activities.”
Despite his incurable condition, despite the splints he wears on his legs at night to keep his feet at right angles and despite the delay in his speech development Top Gear-mad Sammy keeps smiling.
The Bake a Difference will not only raise awareness but provide vital funds for medical research and to Tinies Childcare charity to change the lives of people like Sammy living with muscle wasting conditions.
Oliver recounted the busy and emotional week he has just had, returning from Sammy’s hospital appointment he checked his Facebook and the first thing he saw was a message from the Duchenne Community informing him that a young adult sadly passed away from this condition.
He said: “It’s devastating. This is the shocking reality of this condition, it’s very real. The scary part of it is we have no control of it as there is no cure. It’s truly tragic.”
Oliver and his family have made an emotional plea for support to raise awareness of this little-known condition, he said if they can make even ten people aware of Duchenne Muscular Dystrophy then at least that’s ten more than before.
He said: “We hope that all the families and schools visit our website and register to take part and hold their cake sales, as seriously we need your support.”