Get These Boys to Disneyland! Parents Rush to Get Sons with Duchenne MD to Explore Before They Lose Their Ability to Walk
July 27, 2015
Parents asks for donations to get family of five–including three young boys with Duchenne Musucular Dystrophy to Disney before their disease progress to the point of needing wheelchairs. Read their story below, as printed in the Herald Sun.
THE Shorter brothers are in the prime of their lives. Not that they know it.
On the side of their driveway, a mini-digger is parked ready for action in front of a mount of dirt.
Nearby on the Smythes Creek property, bricks have been wriggled into place with tongue-out-concentration by the boys who are practising to build their own house.
A litter of pint-sized Blundstone boots and colourful gumboots are scattered by the child safety gate at the back door, ready to pull on for chasing lambs in the back paddock or to ride their bikes up the gravel drive.
There is no mistaking this is a home of rough-and-tumble country boys, who are each others’ best buddies.
Aged six, four and two, these are brothers who push their beds together to be close in the night.
One of the highlights of each day for the younger two is school pick-up time, when they pepper Max with questions about his day as soon as he gets in the car.
They are brothers who pick each other up when they fall over.
They are brothers who push each other around, but instinctively know they must be careful when they kiss and hug six-month-old sister Sofia.
If the older two are wearing a hat, Hudson must also wear a hat. If they have shoes on, Hudson needs shoes.
And these brothers, together, will soon cope with their bodies growing weaker a lifetime before nature intended.
Two years ago, Max and William were diagnosed with Duchenne muscular dystrophy.
It is an incurable and progressive neuromuscular disease, which will see parents Leigh and Belinda with all three boys in wheelchairs by the age of 8-12 years.
Their life expectancy is into their 20s or early 30s.
Hudson was eight-month-old at the time, and for the past two years his parents could not help but look for subtle signs — that trip on the step, enlarged calf muscles or walking on his toes — to diagnosis either way.
“We were pretty convinced he didn’t have it,” said Ms Shorter.
“He walked a lot quicker and he was doing a lot more than what they were doing.
“But looking back at it, it’s more that he was trying to copy his brothers.”
In April this year, Hudson was also diagnosed.
The same day, Max started a daily steroid treatment. It aims to preserve muscle strength, as well as function of the heart and respiratory muscles. It’s allowed him to run and jump with his brothers again.
“He hasn’t asked us about it yet. He knows it helps him be able to run,” Ms Shorter said.
“We tell him it’s his fuel to keep him going and he’s fine with that.
“Some days I think how much can two people take? But it’s amazing that you do deal with it.
“I didn’t think I’d be this strong to be honest.”
LEIGH always wanted sons. When Belinda became pregnant four years after they met through mutual friends at the local pub 10 years ago, he let himself daydream about the type of dad he would be.
“I thought about how I’d take them to sport, and maybe when they’re older working with them,” Mr Shorter said.
“They’re probably the things I’ve noticed, the reality of what’s not going to happen.”
The older two boys are just 17-months apart, the same age gap between Leigh and his older brother Dale.
Dale was 24 when he died from bowel cancer in 2007.
“It’s a great age gap between the boys. They’re really close, just like I was with my brother.
“They’ll know, like me, what it’s like to have brother and then not have a brother,” he said.
The couple, aged 31 and 30, have recently started walking for half an hour each night when Leigh gets home from work.
They leave the kids with Belinda’s mum and seek solitude pounding the one-lane bitumen road while they talk.
They think about what will be left for Sofia, who doesn’t have the disorder.
Belinda has told Leigh he need to see a counsellor. It’s on his to-do-list, he assures her.
But while they live in this limbo land — their mind mull over the practicalities of what will soon be, while their eyes see three boys who run, jump and fight, they focus on the now.
This condensed life-sentence has brought with it a renewed love of family.
Before the boys were diagnosed, Leigh drove 90 minutes to work in Melbourne each day.
Now he works in Ballarat as a linesman, ready to brace the charge from three little tackers at the end of each day, each grabbing a limb to drag him out for a kick of the footy.
But weekends are the best.
On Saturday night the popcorn goes on the stove, and they drag the mattresses out from the bedrooms for movies.
Weekends are when they check out the tree-dotted empty paddock that will soon occupy their new home.
Max says he wants to lay the concrete. Leigh hopes his oldest will be content with writing his name on the wet cement.
The diagnosis has tweaked the houses, with ramps, wider doors and bigger garage added to accommodate a van.
In typical country-town style, tradie friends of friends have already offered to help with the build. The Buninyong Football Club has held a family day.
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