Happy little very shortly them lose everything
DAD RAISING MONEY FOR RESEARCH INTO DAUGHTER’S ‘CRUEL CONDITION’
work to become full-time carers. Ben, 40, said: “It’s horrible to watch. What Rett does is trick you into thinking you have a perfectly healthy child, and then it begins to happen.
“One of the big changes you have to make, as a parent, is altering your expectations: with other diseases you get treatment and you look for improvement, even if it’s gradual, but as Rett parents we are constantly bombarding our children with therapies just to stop things getting worse.
“It’s just so cruel in the manner that it works: often you could reach three, your child could have 40 or 50 words, be starting to string sentences together, they can walk, and then they lose that.
“One day you have this happy little toddler and very shortly you will see them lose pretty much everything, apart from their personality.”
The bubbly personality of little Penny, who enjoys going to school at Cleaswell Hill School in Guidepost, is part of what keeps Ben going, alongside the support of eldest daughters Paige and Poppy, as he balances caring for his daughter with tirelessly fundraising for research into her condition.
Research offers hope to those suffering from the cruel disease, with the charity Reverse Rett claiming there’s a realistic possibility of effective treatments and even a cure within the lifetime of children like Penny.
It’s this hope that drives Ben to take part in a series of increasing difficult challenges: running 500 miles over the year, taking part in 10k runs in his bright purple “Rettman” superhero costume, having his legs waxed, and taking part in boxing day dips, all to raise money for Reverse Rett’s research.
He’s already raised more than £1,000, and has pledged to complete a series of increasingly ridiculous forfeits (the latest involving dressing up as a unicorn at a local supermarket) for every £500 raised.
The flamboyant costumes and public displays are a challenge for normally shy Ben, but the thought of finding a cure for his daughter drives him on.
He said: “I certainly believe that a cure is possible within her lifetime. My opinion is within the next few years we will see more pharmaceuticals, and then gene therapies, which are being worked on at the moment, will take more like 10 or 15 years to start to become available.
“If I didn’t believe research offered a realistic hope I wouldn’t be doing this, but I believe this is the best course of action for children like Penny.
“That’s what spurs me on to do all of this.”
Ben is raising money at https://www. justgiving.com/ fundraising/rettman Ben Stewart
What Rett does is trick you into thinking you have a perfectly healthy child, and then it begins to happen