Charlotte's Story

“On the day she was born,” says Charlotte’s mum Saasha, “they could tell her heart wasn’t beating normally”. Her precious little baby needed open heart surgery. Charlotte had two holes in her heart and two faulty valves.

“I had to say goodbye to my baby girl as she was wheeled into an operating theatre where surgeons would cut a huge hole in her tiny chest. It was the most tormenting moment in my life.”

“When we were finally able to see her in the Intensive Care Unit she had so many tubes coming from her body. Everything looked out of place. My daughter should have been playing at the park, not lying there sedated in a hospital bed recovering from open heart surgery.”

1 in 100 children are born with heart defects, just like Charlotte.  

Some just live with them. Others need major surgery. Still others need lifetime care and some, sadly, don’t make it. 

Charlotte is now 5 years old and healthy after major surgery to correct two holes in her heart. Others are not so lucky. 

Why are babies born with heart defects?

Sometimes the causes are genetic. Sometimes the causes are a result of something else happening that affects the way the cells develop.

Our focus is on the genes and identifying mutations that may be associated with birth defects and how to prevent them.

We do have some answers though. In fact, Professor Sally Dunwoodie’s team has already identified 12 specific genetic mutations that cause heart defects in children, out of around 130 known around the world.

But there is still a long way to go. We need to raise $132,000 before the end of the year to map and analyse the genomes of 50 more people who have evidence of mutations relating to heart defects.

How medical research is important for families like Charlotte's

“It’s imperative, especially for families like us, if they could find a cure or some way to stop this from happening,” says Saasha.

“What if something had happened to Charlotte? The thought of this is unbearable. Life is very precious”.

“There are families out there who have lost their children, so I am very aware of how lucky we are to have Charlotte. The work that the Institute is doing brings hope to families just like us.”

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