A new drug offered our short-statured son a chance at a longer, less painful life; but it would also alter the visible signs of his condition
or two years, we flew our young son to Melbourne every three to six months to take part in a drug trial. There is no better place than Melbourne’s Royal Children’s hospital for such a gruelling activity. Enormous fairy dioramas hang from the roof. A cylindrical fish tank as wide as a whale’s gullet and three storeys high is filled with brightly coloured tropical fish. An ice-cream shop in the hospital’s foyer is a great source of sugary bribes.
But I never did pull the pin. Like any difficult decision complicated by long lists of pros and cons, my partner and I ultimately decided that the pros outweighed the cons.At his birth, our son was diagnosed with achondroplasia, a congenital condition caused by a mutation of the FGFR3 gene. It’s the tiniest change, almost too tiny to imagine. At one point in the fibroblast growth factor receptor 3 protein chain, the amino acid glycine is switched out for the amino acid arginine. That’s it.
seven days in between surgeries as absolute hell, it was so painful and so hard to do anything … I just started to turn a corner and then I had to go in and have another one the following week. The second was so painful as well. The surgeon told me that it would be a month until the pain settled … When our son was 14 months old, he was given an opportunity to be one of the youngest candidates in a trial for a new drug – Vosoritide – that promised to eliminate the need for this kind of surgical intervention. We leapt at the chance.
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