Condition not stopping Claire
Coast youngster diving in to life after major surgery
IF IT weren’t for major surgery two years ago, Claire McCulloch would have grown to stand at more than 2.5m tall.
The Twin Waters resident was diagnosed with gigantism when she was seven, after doctors discovered a tumour on her pituitary gland.
The rare condition causes abnormal growth in children, with Claire hitting her current height of 1.6m at age seven.
But thanks to US surgeons, the 11-year-old’s rapid growth has been halted for the past four years.
In 2016 Claire underwent surgery to remove her pituitary gland, which mum Toni said was a last resort.
“The tumour caused her pituitary gland to produce too much growth hormone and we tried for about six months to control it with blockers (medication) but it didn’t work,” she said.
“Doctors were telling us they could only get about 80 per cent of the tumour off and because the medication wasn’t working we couldn’t leave 20 per cent on there.”
After exhausting every option available in Australia, Claire and her parents travelled to the US, where Claire underwent the surgery to remove her pituitary gland.
Without a pituitary gland, Claire’s body is unable to produce the hormones it needs on its own, so she is on full hormone replacement therapy for the rest of her life.
For the past two years Claire’s growth has been on hold but the Year 6 recently started growth hormone replacement to allow her to continue to grow.
“We always joke with the doctor about growing tall to allow her to be a WNBA type person because they are around 2m,” Toni said.
“But that’s not realistic because it’s abusing the system and things like knees and stuff, it’s great until you’re 30 but not after that.
“Medically the formula is mum plus dad divide two minus two ... she will be about 1.8m then she will go off the growth hormone replacement and stay that height for life.” It’s a process that costs the Coast family a lot of money, with it not being covered by the PBS, but they recently received a helping hand from the Steve Waugh Foundation, a not-for-profit organisation founded by the former Australian cricket captain that supports children fighting rare diseases in Australia.
“The quarterly cost of Claire’s medication is $2000 and that has gone up to $5000 with the hormone replacement and the Steve Waugh Foundation has covered nine months of medication costs for us,” Toni said. “It’s just the biggest help and we are so grateful.”
According to Toni, the resilient youngster has maintained a positive outlook on life throughout her ordeal, never giving up her love of participating in sports.
Claire said playing sport kept her happy and, despite sometimes not feeling 100 per cent, she had never thought of giving it up.
“I train for swimming for two hours most mornings and I play basketball,” she said.
“I love sport because I just love being active and having fun with my friends.”
LIVING STRONG: Claire McCulloch is thriving after major surgery two years ago to remove her pituitary gland, which had developed a tumour, causing gigantism.