When loving completely, is all you can do...
Words by Lisa Hayden. Pictures by Jade Smithard.
Social media allows us to access the stories of people near and far.
From Kim Kardashian's every move to oohing and ahhing over Prince George, our fascination with social media is growing.
Every now and then though, we read a story that gets under our skin; that causes us to stop and think before we scroll on - one that is more than pretty pictures and pouty smiles.
The story of the Shorter brothers did just that.
A picture on Facebook of a family with a mum, dad and four gorgeous children drew me in; kids with cheeky smiles playing in that free and easy way that young children have, parents looking on lovingly. These kids were cute and I wanted to read more.
In this case the picture didn’t tell a thousand words. In this case the words were bigger than the pictures and the words made me want to cry.
Four children in one family; three of whom have a terminal illness.
Belinda and Leigh Shorter have three scrumptious tousle-headed boys and one sweet little girl. Max is six, William is four and Hudson two; baby sister Sofia is not yet one having been born in 2015.
On December 23, 2013, Max and Will were diagnosed with Duchenne Muscular Dystrophy, a neuromuscular disease that will progressively destroy their muscle tissue, leaving the boys unable to walk, talk, or breathe on their own. In a cruel addendum to an already terrible situation, little Hudson was diagnosed with the same disease in April this year.
We have seen much in the media lately of neuromuscular diseases. The ALS ice challenge brought this insidious disease into the spotlight. More recently we have watched with awe as Neale Daniher went public with his own battle to raise money for Motor Neurone Disease. And now, our Facebook pages are showing photos of three beautiful little boys who are suffering from a disease that will ultimately claim their lives as their parents can do nothing but watch.
Duchenne Muscular Dystrophy is a genetic disorder meaning that it is passed from parents to children. The mother is the carrier of a disrupted gene on the X chromosome, which results in a lack of the protein dystrophin. Lacking this protein causes muscles to deteriorate and break down. Boys can inherit this faulty gene and girls become carriers. Boys born to mothers who are carriers have a 50:50 chance of inheriting the disease. Tragically, all three Shorter boys have been diagnosed. Sofia may carry the disease but will not experience the devastating symptoms like her brothers.
Looking at these little boys was difficult.
They are typical little boys, curious, inquisitive, noisy and playful. They are handsome; blond hair, flashing eyes, bright smiles, cheeky personalities. The bond they share is warming. They play happily as I watch them run around their house. Every now and then they stop and gently kiss their baby sister Sofia, or sidle up to their mum for a hug. And as they did this, and as I watched them, all I could think was this lack of protein was going to devastate their little lives and reduce their potential. At some point soon, they won’t be able to run or play. Their speech will slur, their breathing will labour, instead of eating a crunchy apple or a slice of carrot, they will survive on softened foods they can swallow without choking. I had to concentrate hard on not crying. Belinda and Leigh will watch this happen to their boys. They will watch as those muscles start to shrink and their movements start to reduce.
All three of their boys.I wonder how they will cope. When life delivers a shattering situation choice is taken away.
Belinda and Leigh do not have the luxury of choosing their reactions to this manifest unfairness. They have four children who deserve the best of them and three children who will require more care than they would have ever imagined.
As I looked at these parents and their beautiful children, the watching became less difficult. I was seeing love in action.
I was seeing a dad who was playing with his little boys and being completely and totally in the moment. Giggles and laughs rang out as they played together. I was seeing a mother who had love oozing from every pore and who was allowing her boys to run and play and tumble and fall. I wanted to wrap those children in cotton wool and protect them from the vicious inevitability that was already imprinted on their genetic material. But their brave mother was allowing them to live normally and gleefully for as long as they could, and oh, what a gift she was giving them.
I was completely humbled as I watched the Shorter brothers live the best lives they possibly could for as long as nature allows. Because this little family knows that life is precious and fragile and that the normal times will not last much longer.
The life expectancy for people diagnosed with Duchenne Muscular Dystrophy is 30. It is a terminal illness. No one has been cured of this disease. The facts are stark. But there are 37-year-old twins living with DMD who describe their quality of life as fantastic.
It is a 'fantastic' placed fairly and squarely in the context of gratitude.
These twins are grateful to be alive. They have family and friends and experiences that are meaningful and so far they have defied the statistical odds. But the context of this illness means that the quality of their life, while being fantastic in many ways, is stunningly difficult in practice. The twins are on ventilators and rely on wheelchairs to get around. This will happen to three little boys in one family as a mother, father and sister watch.
As I watched, I also realized that I was seeing bravery in action. Belinda spoke simply. She said she doesn’t think too far ahead because to do so is just too painful. Leigh agreed, as he held his baby daughter and touched his wife gently. They have each day and they enjoy what each day brings. On the outside things are normal - little boys riding bikes, playing in a cubby house and jumping on a trampoline. But if you look more closely, you can see what their parents see - that they take a little longer to get up from the ground, that their legs are stiff when they run, that they find it hard to walk up hills. Belinda apologized for shedding tears and quickly replaced her sadness with a beautiful smile. A mother’s grief replaced by bravery. A father’s anxieties replaced by strength.
The Shorter family is looking for quality because they know that quantity will not be theirs. Family and friends of Belinda and Leigh have decided to help them through the establishment of a fund aimed at raising money to give this family one wonderful, adventurous and memorable holiday to Disneyland.
A holiday where little boys can be boys and do the things that most parents imagine their children will have a lifetime to enjoy. A holiday where three little boys and their baby sister and the parents who adore them can make memories that will have to last a lifetime, because time is just not on their side.
Belinda and Leigh told me of the plans they have for their new home. Currently living with Belinda’s parents, they are building a home for their family. Their excitement was evident. But this too, is coloured by the needs of their boys; an alcove to park three wheelchairs, space for a hoist that will lift their boys into a bath, room for the van they will need to take their boys places - with space for those wheelchairs... all three of them - and widened doorways and ramps.
Belinda and Leigh are uncomfortable about going public with their story, although Leigh acknowledges he feels less alone with others knowing what they are going through. They do not find it easy to accept gifts from strangers. They are private, independent, yet they know what their needs will be.
A stroller they use for Max when he is unable to walk long distances costs $6000. I think, but don’t say, how much this adds insult to genetic injury.
Leigh wants to make sure that I convey their thanks to the people of Ballarat for their generosity. Buninyong Football Club has had a fundraising day, St Francis Xavier School, where Max is in Prep, is selling shoe laces and wrist bands, Powercor, Leigh’s employer, is being very supportive. Their gratitude is deep and sincere. But their needs are just so much more.
Tragedy has struck this family three times over. Their needs are magnified by an illness that marches relentlessly through their little boys. And those needs are multiplied by three. I think how hard it would be to do this with one child which makes it almost unbearable to think this little family will do it with three.
We have reported in the past on how the Ballarat community has come together to support the likes of Aron Siermans who lost his mother to a violent killer and the four little Edwards children who lost their Angie to cervical cancer. The people of Ballarat are wonderful at helping out and Ballarat Lifestyle would like to ask everyone to do this once more.
Please help the Shorter family raise money to have a holiday that will last them a lifetime and then to donate money to research into neuromuscular diseases. Finding a cure for Duchenne Muscular Dystrophy will let little boys grow into big boys. It's all any parent wants...