Bucket list for step-brothers with rare disease

Stepbrothers Cameron McKenzie, right, and Ben Stewart both have Duchenne Muscular Dystrophy. Picture: Ian Rutherford
Stepbrothers Cameron McKenzie, right, and Ben Stewart both have Duchenne Muscular Dystrophy. Picture: Ian Rutherford
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STEP-BROTHERS Cameron McKenzie and Ben Stewart are so alike it’s hard to believe they aren’t blood relatives.

Both treasure their iPads, share a fascination for the game Angry Birds and – despite odds of “more than a million to one” – they each suffer from a rare muscle wasting disease.

The illness, called Duchenne Muscular Dystrophy (DMD), means the youngsters struggle to keep up with their friends and within just a few years will be entirely unable to walk.

Cameron, eight, is already largely confined to his power wheelchair and is forced to an electric bed. It is a battle to pick himself off the floor and climbing the stairs all but impossible. Tragically, Ben, a year older, is facing identical hardships.

Looking at their bubbly faces, it’s a wrench to accept they’re unlikely to survive beyond their teenage years.

Now their remarkable family – mum Sheryl, dad Alan, and sisters Phoebe, six, and Layla, two – have vowed to fulfil their wildest dreams before their bodies begin to fail them.

“The only thing we are going to be left with when they are gone is memories and photos so it means everything to us,” said Sheryl, 35.

“They’re getting a wee bit older and Cameron is deteriorating earlier than we thought – we don’t think he’ll go another year walking – so now is the time.”

The family from West Lothian recently sat down together and drew up the boys’ “bucket list”.

“They don’t really know what it means because they don’t really know the extent of their illness yet,” said Sheryl, who explained that the family are open about the extent of the boys’ illness with family, friends and the wider community.

“We just drip feed them information when they ask.

“What’s important is fulfilling their dreams and having no regrets. If the worst happens sooner rather than later, we want to know we’ve done everything we could to make their dreams come true.”

The boys, who were both diagnosed as toddlers, first met four years ago when their parents rekindled a romantic relationship that petered out as teenagers.

Alan and Sheryl began dating as 16-year-olds and had been childhood sweethearts but the teenage affair waned.

Years later they met again through a mutual friend who explained that both their children were suffering from the same illness.

That quirk of fate drew the two together again and they were married in 2011. Cameron and Ben, already the best of friends, became step-
brothers.

They all now live together in Stoneyburn.

Sheryl has been forced to give up her job as a housing officer to become the boys’ full-time carer.

“It’s so rare to even know someone who has a child with DMD, for it to happen to both of us, it’s unbelievable,” she said. “It’s a one in a million chance that this would 
happen.

“Alan’s wife had died and I had already split up with my husband so we got back in touch and then got back together.”

Kick-starting their adventures with a trip to Lapland, the boys’ wish list includes meeting comedian Harry Hill and the cast of Top Gear.

Since completing a school project on Australia, Cameron has longed to visit the sun-kissed land with its strange animals while Pinewood pupil Ben is desperate to meet Mickey Mouse at Disney World.

“The boys love Top Gear and just howl with laughter when it’s on,” said Sheryl. “They both really like Harry Hill as well so it would be a dream come true if they got to meet them.

“Cameron wants to go and have sausages on a barbecue on the beach, he wants to see a kangaroo and the Sydney Opera House.

“Ben has learning difficulties but he loves maps and geography. For his last birthday we got him this huge map which has different animals of the world and he said he wants to go and see them all, starting with Australia.

“We know it’s a lot of money and a long way to go but now the family’s thinking ‘let’s get them there’.”

As Cameron weakens, the urgency becomes ever greater.

Both boys had been on steroids, to help keep them mobile for longer, but the side-effects were so severe the family felt there was no alternative but to stop.

Cameron fell so deep into depression his mum Sheryl told how he was almost suicidal at just eight years old. This forced her to withdraw the drugs – a move that has accelerated his decline.

He is now showing signs of curvature of the spine – where it bends over on itself and can crush the lungs and the heart. Eventually the sparkling pair will need spinal rods inserted stave off further complications.

“We really need to do the bucket list items before they need the respirators, the ventilators, before they need the feeding tubes and things like that,” said Sheryl.

“We’re desperate not to leave it too late because we want Cameron to be able to walk at least some parts of it.”

An astonishing fundraising drive has so far reached £11,000 – around half the total needed for a trip to Australia.

One family with little cash to spare raised £1600 by scaling Ben Nevis. Another is set to run the 40-mile Clyde Stride Ultra-Marathon for the cause.

“The community spirit is absolutely fantastic,” said Sheryl. “I think people like to see where the money goes and people know the boys and what wonderful characters they are. They know it’s a trip of a lifetime for them and it’s close to people’s hearts.

“The boys have got such a special bond, they would literally do anything for each other. It’s good that they’ve both got each other and as though fate brought us all together. They’re probably closer than brothers would actually be, which is why we say they are ‘beyond brothers’.”

To donate to the boys, visit http://www.gofundme.com/beyond-brothers

LIFE EXPECTANCY REDUCED

Duchenne Muscular Dystrophy (DMD) is a genetic, muscle wasting condition that affects around 157 people in Scotland, according to Paul Lenihan, CEO of charity Action Duchenne.

He said: “It occurs in approximately one in 3500 male births. It is passed on through the mother or can be caused by a spontaneous genetic mutation and because of the way it occurs genetically over 99 per cent of those living with Duchenne are male.

“Children born with Duchenne are usually diagnosed when their parents or teachers notice that they are finding it difficult to stand up, walk or keep up with their peers.

“As people with Duchenne get older they will usually need a wheelchair by the time they are 11, have lost the majority of their muscle function by their late teens, and have a significantly reduced life expectancy. Steroids are routinely prescribed as they help to maintain muscle function.”