I vividly remember the last time I locked eyes with my daughter Mackenzie. We were in the ICU at Sydney Children’s Hospital; she had an oxygen mask on her face and was visibly upset as it was pushing air into her lungs helping her breathe. I knew she wanted me to fix it – In a moment of feeling completely helpless, all I could think to do was sing songs from Aladdin and the Wiggles to try and sooth her. In my heart, I knew this was the last time I’d see her eyes, so I snapped a quick photo on my phone and kept singing.

Not long after, the medication kicked in and Mackenzie closed her eyes for the last time.

Just a few months earlier, Mackenzie had been diagnosed with Spinal Muscular Atrophy (SMA), a horrendous disease which would slowly rob her of her ability to move her arms and legs, to swallow, and eventually even the ability to breathe.

Life leading up to this moment in the hospital, was an extreme contrast for Mackenzie.  After being diagnosed with SMA, my wife Rachael and I decided she was going to live the best and fullest life she possibly could in the short time we’d have her.

I took a leave of absence from work, and we did something each day as an adventure or memory for Mackenzie. Even if it was just a walk around the park, or exploring a new area of Sydney, we did something different. Every few weeks she had a check-up with her Neurologist, when we were told she was doing well, we would book a short trip, and she would travel.

Among many other adventures, Mackenzie saw a dolphin in the Swan River, watched a sunset in Broome, she dipped her feet in the Coral Sea at Cape Tribulation, caught snowflakes with her tongue in the Snowy Mountains, watched butterflies in the Daintree Rainforest, and yachted on the Huon River in Tasmania.

In the seven months and 11 days we had Mackenzie, she lived a very good fun life, filled with love.

Prior to trying for a baby, Rachael and I did everything we could to prepare our bodies for a healthy pregnancy. We had acupuncture, took vitamins and had medical tests. 

Rachael fell pregnant within a few months of trying however miscarried a baby at around six weeks, a baby we named Hope. I remember naming the baby Hope in an attempt to stay positive.

During the pregnancy of Mackenzie, we had every scan we knew of, which included the Harmony test which showed nothing irregular.

After her diagnosis, Rachael and I learned there are simple tests which can be done to prevent babies being born with conditions like SMA, cystic fibrosis, and Fragile X. Three conditions when added together have the same prevalence as Down syndrome. Add the literal thousands of other recessive genetic disorders, and it’s amazing we don’t see more children suffering than we do.

When we weren’t travelling, making memories or just trying to be normal parents with a new baby, we were lobbying the Australian Government.  Our attempt started with a letter to every Member of Parliament which I really didn’t think was going to get the response it did.

Within hours of the letters reaching their intended desks, we started to receive emails and phone calls from members on both sides of Australian politics who had been greatly touched by our story. We had meetings with members of Parliament, the NSW Health Minister Brad Hazzard, and eventually the Federal Health Minister Greg Hunt.

Our story was picked up by some of the Australian Media; we did stories for news shows, current affairs programs, as well as many different online and printed media outlets.

In the federal budget released in May 2018, the then Federal Treasurer Scott Morrison stood up and announced a $500 million-dollar genomics project which is going to revolutionise the way Australian families have children.

The pilot of the genomics project is a $20 million-dollar program the Australian Government has named Mackenzie’s Mission (yes named after our Mackenzie), which will test 10,000 Australian couples over three years for genetic disorders and provide a free round of IVF for couples that are deemed to be high risk.

I say ‘we’ because Rachael and I are a team; however, my wife is incredible, and did most of the lobbying work herself. She was determined to give our daughter a legacy and did not stop until the goal was reached. I am so grateful to her for everything she has done and continues to do today. I’ll never be able to repay that debt.

Mackenzie passed away quietly and peacefully in a dark and gloomy corner in the ICU of the Sydney Children’s Hospital in Randwick on the 22nd October 2017 under the watchful eyes of a doctor, a nurse and being held and kissed by her mother and father.

After her passing, I watched Rachael change her nappy and clean her up. The face mask came off, and I realised it was the first time I’d seen her face in about four days since we arrived at the hospital. We carried her to the morgue because we couldn’t stand for someone to come and take her away from us.

It might seem logical to most of us, but if you work in a morgue I have a tip for you:

If parents are bringing their child to you a few minutes after she’s passed away, please make sure they have left before you start unzipping unravelling or even touch a body bag. 

The sound of that zip from behind the closed door haunts me to this day.

When we left the hospital, we found one of those perfect Sydney days where the sun is shining, the beaches look beautiful, and most people are simply enjoying life.  We stayed at an apartment overlooking Bondi beach for the next few nights and had to watch people enjoying themselves. We like to think that if they knew what sadness we had just endured, they may have acted differently, but we know that time moves on, and everyone just keeps moving.

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Written by Jonathan Casella

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