Little Mabel Johnson faces a lifelong battle … but she won’t be alone.
Subscribe now for unlimited access.
$0/
(min cost $0)
or signup to continue reading
The three-month-old baby has been diagnosed with Prader-Willi Syndrome, a rare genetic disease affecting one in 15,000 children which impacts her feelings of hunger.
Mabel’s mother Libby Johnson said the Prader-Willi Association offered genetic therapy, which could help reduce her daughter’s symptoms.
The treatment costs $15,000, which is the amount ‘Team Mabel’ hoped to raise by running in the City2Surf earlier this month.
On Saturday, the Hawks Netball Club and Orange Netball Association also threw their support behind the cause by donating a gold coin for every goal scored by Hawks players.
Taking into account the $2550 raised on the courts on Saturday, almost $30,000 has so far been raised.
Mrs Johnson said the support demonstrated by the community had been nothing short of “amazing”.
“We’re feeling very overwhelmed and humbled by everyone’s generosity to help, and feeling very supported that Mabel will be cared for,” Mrs Johnson said.
“We’re incredibly grateful to everyone who’s supported us, from the Hawks, to the Orange Netball Association, to the community.”
The brave little girl will face plenty of obstacles in the years ahead.
During the first phase of the syndrome, Mabel won’t wake up or cry out when hungry and will need a feeding tube.
Between the ages of two to eight, hyperphagia can develop, which means Mabel may never feel full or satisfied when eating.
“It’s very dangerous. Children can die from overeating, they don’t know when to stop,” Mrs Johnson said.
Mrs Johnson said as well as hyperphagia, a number of other genetic issues could affect Mabel in the coming years.
Hawks Netball Club committee member Robyn Mulhall said the club was rallying around the cause.
“We’re absolutely blown away by the support of other people, people have been so generous,” she said.
“It’s been an effort started by the Hawks but it couldn’t have succeeded without the support of the wider netball community from mums, dads and grandparents.”