My name is Dominic Frawley, and I have written a book called ‘MALACHY’ about the life of my HeartKid Malachy. In the book I try to show the real impacts of childhood heart disease on our whole family. It tells Malachy’s story in the context of our young family, with Malachy being the youngest of four children. Malachy died at the age of 14, by which time HeartKids had played a very significant role in our lives.
Malachy
Malachy had a very stormy start to life, being flown to Sydney Children’s Hospital by helicopter from Nowra on his first day. Like many Heartkids he was forced to deal with very adult challenges from a very young age. He developed a very mature and engaging manner. He loved to tell stories and aspired to becoming a published author. Along the way he made his own YouTube channel, produced a movie through Make A Wish and made a great start on an adventure novel. He was passionate about justice, including caring deeply for the cause of childhood heart disease. Some of you may have seen him on posters and brochures in the past.
Siblings
Imogen, Seamus and Niamh, our older children, walked every step of the way with Malachy. There are many pressures on brothers and sisters when someone in the family has a serious illness. In our example, Malachy attracted a lot of attention from friends and family, sometimes ending up hogging the limelight. Meanwhile the others had to share our fear about operations and limitations to Malachy from his disease. Our family life always had to take account of Malachy’s impaired abilities.
Maggie and Dom
Maggie and I were fortunate to have a very close relationship and supportive families as we dealt with Malachy’s multiple operations and day to day struggles. Maggie once described HeartKids as a beam of light coming into the darkness of overwhelming challenges. HeartKids was so helpful to us that we both got drawn into active involvement – and were all the richer for it. Maggie became the first manager to be employed by HeartKids NSW, travelling back and forward to Sydney from our home in Nowra endlessly for years. Exhausting and rewarding in equal measure. I was involved at the time when the many small state HeartKids groups were working out how to join to help promote and grow the cause. This led to me being the first Chairperson for HeartKids Australia when it formed. It is very heartwarming to see how far things have come – and how many families are now supported by HeartKids around the country.
Hospitals and Operations
I have had feedback about the book ‘MALACHY’ from some of the doctors involved in Malachy’s care during his life, and they tend to comment that it is a bit confronting for them. Hospital appears more chaotic, with more dips in the roller-coaster than you can possibly observe on a ward round. The doctors and nurses, and the other staff who care for our children, do such an amazing job, but they can’t live the hospital experience the way we have to as patients and families. It is only families who have been through it who really understand what it feels like to endure every minute of every day with you or your child’s life in the balance, hanging on every minute sign of progress.
HeartKids in Our Life
When Maggie and I first met other members of HeartKids, we felt like they were the first people to truly understand what we were going through.
We are forever grateful to all the HeartKids members we met, and the people we worked with to help HeartKids, on the committees and on the staff in each state, and the doctors and researchers we worked with along the way. All these people brought so much hope and so much care into our lives, and the promise of a better future for the next generation of HeartKids families. I hope with all of us working together to see HeartKids continue to grow and deliver more services and better research for our children.
Grief
Losing Malachy is an important part MALACHY. I hope in sharing our story that others who suffer such tragic loss can find a way to celebrate the wonder of their child’s life, despite the enormity of grief. In documenting this part of the story, I hope to show solidarity with anyone who must go down the same road, and show them they are not alone in their journey.
‘Malachy’ – the Book
I you would like to read ‘MALACHY’ it is available through bookstores – ask for it if you don’t see it on the shelf!
You can also buy ‘MALACHY’ through the publisher, Wild Dingo Press
Dr Dominic Frawley AM
