They’re determined to be ordinary boys
 Typical boys. Yet they are anything but — Mykel and Kristopher have Duchenne’s Muscular Dystrophy and are confined to electric wheelchairs.
It doesn’t stop them from arguing with each other, it doesn’t stop Kristopher from flying down rutted hillsides in his chair, it doesn’t stop Mykel from going to the shops on his own, and it doesn’t stop them from being grounded. They are determined their condition won’t stop them any more than it has to.
Custom-built
Along with mum Tamela and step-dad Kevin, they’ve moved into a new custom-built house in Leven in Fife and I met them there to talk about living with Duchenne’s, the most extreme form of the condition, and with each other.
Tamela remembers how she first began to worry when Mykel was still a toddler. “He was very slow when he was crawling and took a while to walk. When he did start walking, he fell over a lot. I went to my doctor, but he just said that some kids were slower than others.
“I wasn’t convinced and things didn’t get any better. Later, I got a new GP and told him what I was worried about. He must have had a better idea about what might be wrong because he had blood tests taken and Mykel was diagnosed with muscular dystrophy. I was devastated. He was only three.
“At that time Kristopher was climbing and crawling like any normal toddler but he was tested as well and he too was diagnosed with Duchenne’s.
“Even then I didn’t understand much about it. I knew it was a muscle wasting disease but thought they’d still be able to do things like play football — just not for as long as other boys.
“Then I was watching TV and a film came on called When You Remember Me about a boy who had Duchenne’s. That was how I learned how bad the condition was. I cried my eyes out.
“It felt like my world was being ripped apart. The two things that meant most to me were being taken away.”
Tamela says she made mistakes with Mykel that she was later able to learn from when Kristopher too struggled to walk.
Mykel would struggle to walk from one lamppost to another without falling and Tamela would pick him up and carry him rather than encourage him to keep going.
She came to realise how important it was for both boys to be independent, to walk under their own steam as long as they could, and to develop determination and will-power. Meeting them there’s no doubt Tamela has succeeded in doing just that.
When Mykel had to concede defeat at the age of seven and accept his wheelchair, it was obvious to Kristopher there was something wrong with him too and that he’d follow his brother into a chair. Yet he was determined not to take it sitting down.
Bouncy castle
He demanded Tamela and Kev buy him a trampoline, thinking somehow that would strengthen his legs and he’d still be able to walk. When he was told that wouldn’t work he asked them to buy him a bouncy castle instead. They didn’t know whether to laugh or cry.
There’s been a fair bit of laughter and tears over the years but they have seldom let it get them down and have fought every inch of the way to ensure the best quality of life possible for the boys.
One result is their new home with extra-wide doors for the wheelchairs and everything on one level — so doing away with the laborious process of lifting boys and wheelchairs up stairs. There have been other, unforeseen, benefits too.
“I go to the shops on my own,” Mykel tells me with a big cheesy grin that speaks volumes for how chuffed he is at doing it. “On my own,” he adds, just in case I didn’t get it the first time.
Everything seems that much easier in the new house and everyone gets along much better as a result. Tamela and Kev admit it isn’t easy bringing up the boys and that it puts unnecessary strain on the two of them at times.
“Things being the way they are makes a relationship difficult and we both know the boys must always come first,” says Tamela. “But we have many more happy times than sad ones and we work hard at it.
“We try to make as much time for each other as we can, but it isn’t always possible. That’s another reason why Rachel House helps so much. When the boys are there, Kev and I can have quality time together. That’s our time.”
But it makes such a difference for the boys too. “They absolutely love that place,” says Kev. “I can’t say enough about it. It’s fantastic for them and they’d certainly go more often if they could. We stayed there the first time Mykel went but since then he hasn’t let us go back. They don’t need us to hold their hands.
“Also, if we need advice at any time we know we can go there and are always welcome. And the staff tell us what we need to hear.”
“It’s brilliant,” agrees Tamela. “When we were first told about Rachel House I didn’t want to go and felt sick at the thought of it. But the second we went through the door I realised I had nothing to worry about. It’s a godsend for them and for us.”
Mykel and Kristopher’s reasons for loving Rachel House are much more basic. In a rush they spill out “the Jacuzzi”, “the chippie”, “McDonald’s”, “the pictures”, and “the computers”. Typical boys.
Awkward
Tamela and Kev resolved long ago to tell them what they wanted to know about their condition and never to lie to them about it. Yet as they get older they are beginning to ask more and more awkward questions.
“Mykel asked me a couple of weeks ago why he couldn’t walk,” remembers his mum.
“I explained it was because I had a missing gene that I passed on to him. He thought about that for a moment and said, ‘So if you had had that gene I could have walked’. I thought, ‘Ouch! Don’t hold back, Mykel’.
“I don’t think of myself as strong or brave,” she says. “This is my life and these are my boys. You can sit back and crumble or you can take it by the scruff of the neck and get on with it. There’s really no choice to be made.” |
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Kevin and Tamela with Mykel (left) and 
