Smile with Shiv
We just say his muscles are different
We never know what life’s got in store for us. When he was three, my son Shiv was diagnosed with Duchenne Muscular Dystrophy (DMD), a serious and progressive genetic condition that causes muscle weakness and wasting. It almost always affects boys, and the average life expectancy is 26, mainly due to heart failure. There is no current cure or effective treatment.
Before Shiv’s diagnosis, there had been some tell-tale signs: not running so much, hard to climb stairs. Having his DNA tested and waiting for the results were the worst one and a half months of my life.
Don’t sit back
At first, my wife and I told no one – not even family. We needed time to come to terms with it ourselves. What eventually saved us, emotionally, was the decision not to sit back, but to take action to help find a cure. So, we started spreading awareness about Shiv’s condition and set up Smile with Shiv, a cause to raise funds to fight Duchenne.
Today at the age of eight, Shiv is still on his feet but uses a wheelchair to get around school and when we go out shopping. We just look at things as positively as we can. We say his muscles are ‘different’ – not ‘weak’, which would be negative. We focus on what he can do. He’s great at maths and loves football. So, we take him to see Liverpool play – he’s a huge fan – and we got him involved in Powerchair football.
Keeping Shiv on his feet takes a tough regime, though. My wife gave up her job to look after Shiv at home and organise the physical therapy and trips to hospital. That put much more pressure on me as the sole breadwinner. How have I coped? By being positive – just like we are at home – and trying to see this as an opportunity.
Telling my story
I knew that ING had partnerships with charities in the UK, so I put forward Smile with Shiv as a prime charity and was very humbled to receive ING’s support.
Apart from raising money I’ve also been able to tell my story. Shiv’s story. And in a way: the story of the 300,000 others around the world who have Duchenne.
Work colleagues have been extremely supportive, and I’ve been able to balance my time with hospital visits and conferences if I need to take over from my wife. I even remember when someone very senior in the bank took time out just to find out how I and my family were coping. I felt understood.
But we still have a way to go. The work pace at a bank like ours can be challenging sometimes, and it can be difficult to juggle work and home. That’s why I’ve been speaking to colleagues about Duchenne and being more inclusive at work. I’ve also had young adults with Duchenne come to ING in London to do some work and be involved in the office environment.
If you think about it, everyone has a story. Yes, mine might be fairly hard-hitting. What I hope is that my story will raise awareness, not just for rare conditions, but that we as human beings can go through tough times. People need understanding, even when trying to meet that tough deadline or get that important project done. So let’s be cool with each other and also stay positive. How can I know that the person I’m talking to does not have personal challenges, too?
Free to be yourself
People are most motivated when they are free to be their whole selves. That’s why we celebrate inclusion and value a diverse workforce. It’s not just a box to be ticked. It’s fundamental to our future success.