From the moment he came into our lives, Mac has had a smile on his face: even at his customary 6.30am wake up, he breezes into the room and brightens the darkest of winter mornings. He loves doing all the things boys love doing. Football, cricket and rugby are his favourite sports; he loves cars, Lego and board games. And his knowledge of world geography is better than most adults: wondering about the capital of Mongolia or the Central African Republic? Just ask Mac.

At his summer sports day in 2022 we noticed that Mac was falling behind his peers physically – during the 200m race he was half a lap behind. While he waved cheerily at his classmate spectators who were encouraging him, we knew something wasn’t right. He has always had a little trouble getting up off the floor and we mistook his enlarged calves for meaning he’d be a champion track cyclist one day. Or an All Black.

After the sports day we took him to a physiotherapist to find some stretches to help what we thought might be tight lower leg muscles. They referred us for genetic testing for a condition known as Duchenne muscular dystrophy. We’d never heard of this condition, which affects boys of all backgrounds but following his diagnosis in August 2022, we are well on our way to becoming experts in this rare and debilitating illness.

An error in his genetic code means the body is unable to produce dystrophin, a vital protein in muscle health and repair. Without it, the muscles degenerate and most boys need to use a wheelchair by their early-mid teens. It later goes on to affect their heart and lungs and this reduces their life expectancy.

Our hearts are broken and our lives have been turned upside down, yet the everyday remains the same: we laugh, we play, we negotiate over homework and screen time. It is the worst news for any parent to hear that your child has an incurable life-shortening condition and we continue to grieve for the life we had imagined for him before we had even heard of Duchenne. His dreams of enjoying world travel, global street food and fast cars remain a reality.

There is a rapidly improving treatment landscape via genetic therapy and technological advancement that will potentially offer life-changing breakthroughs for Duchenne patients in the coming years. Our fund, Mac my Day has been set-up with the goal of helping the Duchenne community find a cure sooner rather than later and ensuring that all Duchenne boys can realise their dreams too.