10 year old Toby with Ehlers-Danlos Syndrome Regains Independence
The local community responds to a hospital fundraiser for Toby and buys him a new wheelchair – just in time for Christmas!
A ten-year-old who struggles every day with pain and exhaustion due to a debilitating condition can ‘take his independence back’ thanks to a Christmas boost.
Toby Skerman was diagnosed with complex Ehlers-Danlos syndrome when he was five, a connective tissue disorder which means the tissues of the body stretch too much, causing instability of the joints, weak unsupported muscles and internal organ dysfunction.
There is no cure for the condition, but thanks to fundraising from Nuffield Hospital staff in Haywards Heath, Toby has a Beach Hippocampe wheelchair, enabling him to go off road.
His mum Sarah said: “It is amazing, it will change our son’s life and our whole family’s life.
“It’s been a tough journey, it’s a struggle every day for Toby. As he is getting older the condition is becoming more and more apparent.
“It’s a shame to see his life going before him without being able to do some things. But this takes his independence back, the independence his disability takes away from him.”
Sarah was contemplating re-mortgaging her house to buy a wheelchair, which she says can be ‘hideously expensive’.
But at a fund raising event for Great Ormond Street at the Orchards, she was talking to Sharon Pargeter, matron at Nuffield Hosital.
Sarah explained: “That lady is just astounding. She said to me ‘my dear girl don’t put it on your mortgage’.”
The hospital went on to hold cake sales and knitted teddies in a effort to help Toby.
“They haven’t done it for anything but our little boy, they just wanted to help us, It really does bring back your faith in humanity” Sarah explained.
“There are always horrible things going on, people shouldn’t focus on the negative things, but nice things do happen, people should be shouting about the good people.”
Sharon Pargeter met Toby when he came to One Great Day in The Orchards this summer, and was inspired by his courage.
She said: “Toby and his family showed us all just what matters in life.
“They are full of vitality and happiness and just keep fighting on and on. It’s made us feel very humble, while strengthening our determination to ensure the wheelchair arrived for Christmas.”
Toby will now be able to go on school trips.
His mum continued: “He isn’t able to walk huge distances, anything has huge repercussions later that day or the next day. It affects his joints and muscles. It’s debilitating, painful and exhausting.
“We have a wheelchair, but it’s like if you were going to take a city bike across the countryside. We can’t access the beach or the downs.”
The condition can make Toby very pale and thin, whilst he is ‘profoundly dyslexic’.
Sarah continued: “The illness is in every tissue of your body, that’s why he’s got bad bladder, joint and muscle problems. He’s aware of his condition but he doesn’t make a big thing of it, he doesn’t use it as an excuse.”
The new wheelchair will allow Toby to walk his dog, and make him ‘more like an able bodied person’.
“I can’t believe it, it’s thanks to the kindness of their hearts, when they old me I felt like bursting into tears,” Sarah added.
The local UK community helps Toby stay mobile and live a more fulfilling life with debilitating Ehlers-Danlos syndrome.
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