E
very mother knows those anxious few moments after giving birth, waiting to be told their child is healthy. For Meagan Bourne, those words didn’t come. She was told shortly after having her second daughter, Amy, following an emergency caesarean section, that her baby had achondroplasia, or dwarfism.
Professor
Ravi Savarirayan & Amy
It was a shattering moment. The first year, she admits, was the hardest. But her worries eased ever so slightly when she learned Amy was otherwise well. “You learn that she is healthy and she’s smart, and she’s still going to be Amy,” Meagan says. “She’s just going to be little. “Once you get your head around all those positives, it does make it a little bit easier.” Meagan remembers asking Professor Ravi Savarirayan if there was a cure for achondroplasia. The answer was no, but there was hope. Amy, now eight, is one of a small group of Victorian children involved in the Australian arm of an international trial testing a new drug treatment on children with achondroplasia. Amy’s growth was measured for two years before she became part of the trial. She now receives daily injections of the drug. Meagan was concerned about the long-term health impact on the bones, joints and spine associated with achondroplasia and was keen to help Amy in any way possible. “I thought if there is a chance of reducing some of those health concerns, I’m interested,” says Meagan. She also felt Amy’s sunny personality meant she would cope well with the rigours of a trial. Amy, she says, is “divine”, has lots of friends, adores her 11-year-old sister and has a great imagination. Her short stature doesn’t hold her back from physical activity, either. Her favourite activities are running and swimming. “She just loves life and is a kind, happy person,” says Meagan. “That’s why I thought she would be suitable for the trial.” Happy tears cloud Meagan’s eyes as she talks about the staff involved in the research at the Murdoch Childrens. She is awestruck at how excited Amy is when she visits the Institute so she can see the staff again. Meagan is hopeful the research will not only help Amy to live a healthier life, and continue her love of running and swimming, but also benefit other kids in future. “That’s what it is all about.”
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