My husband, Jonny, and I were a normal couple living a happy life, married for two years and decided we wanted to start a family. We prepared for over six months before we tried to get pregnant. Based on advice, we did every test and pre-pregnancy preparation we thought we needed to give us the best chance for a healthy baby – vitamins, scans, harmony (or NIPT) test, etc.

On March 11, 2017, our planned for, very loved baby girl was born. We called her Mackenzie and she was pure perfection. I have never felt happier and more at peace with life.

Jonny and I had ten blissful weeks with Mackenzie before our world fell apart. At ten weeks old, Mackenzie was diagnosed with Spinal Muscular Atrophy (SMA) type one. We were told it was terminal. There is no cure.

And just like that, our world fell away. It felt like a living nightmare and we couldn’t wake up. We haven’t really woken up from it since that day.

We learned that SMA is a neuromuscular disorder, characterized by loss of motor neurons and progressive muscle wasting, often leading to death. Basically, babies with SMA lose their ability to move, swallow and finally to breath. The average age of a baby with SMA is eight months old.

In Mackenzie’s case, we were advised that we had a matter of months to create memories with her. From that moment, we didn’t waste a second. We lived every single moment with our baby; she felt sand on her toes, snow on her tongue, wind in her hair and sun on her skin.

On October 18, 2017, Mackenzie suddenly fell ill with a cold. After four days at Sydney Children’s Hospital, we watched our little baby pass away. Mackenzie shouldn’t have died. We miss our daughter desperately, more than words can express.

Every day I find ways to honor or remember Mackenzie. I need so much of my life to revolve around her still. I am still her Mum and she is my princess; this is where Tiny Tags came into my life.

I was contacted by Melissa, the owner of Tiny Tags,  who wanted to give me a gift I could wear every day that linked me to Kenzie. Every day I sit at my desk at work, in this weird space where sometimes it scares me that life is continuing like nothing ever happened, but then I feel my tag around my neck and I know; she was here.

Watching her struggle and lose her battle made my family begin fighting for change in Mackenzie’s name. After campaigning since May 2017, the Australian Federal Health Minister, Greg Hunt, announced Australia’s largest health initiative under the Medical Research Futures Fund called ‘Mackenzie’s Mission’ which is a genomics program for Australia. It will save lives, inform parents, and help hundreds of thousands of families, all in Mackenzie’s name.

– Rachael C.

To watch a small snippet of our journey:

SMA genetic screening: couple who lost their baby fight for free testing
SMA update: a couple’s fight pushes Health Minister to a change in policy

For more information on Genetic Testing, Mackenzie Story, our Genetic IVF journey and SMA please visit my blog mylifeoflove.com or Instagram @mylifeof_love