The Geelong community has rallied around Grovedale 15-year-old Maddy O’Keefe as she continues her fight against a life-long, life-threatening condition. With their support, her family hopes to give her “experiences that she’s never had”, her grateful and overwhelmed mum Traci Ellmer tells Luke Voogt.
After 15 years in and out of hospital, Maddy O’Keefe has “never seen a waterfall” or “been to Phillip Island to see the penguins”, according to mum Traci Ellmer.
Maddy has a rare neurodevelopmental condition called Rett syndrome, and began her latest eight-day stint at the Royal Children’s Hospital just over a week ago.
“When I think of all the things, I want to do with her – it’s made me sadder,” Traci said on Tuesday.
“All these things that we wanted her to see and experience were out of our reach.”
To make matters worse, Maddy’s dad Adrian underwent major surgery to remove part of his bowels and repair his bladder on October 1.
“He looks like he’s been cut in half the poor bugger,” Traci said.
Being a full-time mooring master, but on a casual rate, Adrian felt compelled to return to work – minus physical duties – to provide for his family.
“We had no holiday pay or sick leave,” Traci said.
“As much as Adrian should be at home resting, he’s gone back to work and is still coming up here to support Maddy and I as much as possible.”
Maddy had only a few weeks at home before her latest admission and has spent up to 66 days at a time in hospital since her diagnosis.
“We have come close to losing Maddy several times,” Traci said.
“She has an amazing team of specialist doctors and nurses that have got her back from the brink.
“You’re just always so worried that this is going to be it. But we try to stay positive, or else the rest of the thoughts will eat you alive.”
Maddy had only celebrated her first birthday when her parents noticed her development halt and begin to reverse.
Specialists took several months to diagnose her with Rett syndrome, a rare condition that only 200 Australians have.
Rett syndrome occurs almost exclusively in girls and causes difficulty breathing, muscle weakness, seizures and other complications.
The condition has left Maddy unable to speak, walk, eat, reposition herself and sometimes even breathe easily.
“We live quite an isolated life with Maddy because she’s quite medically fragile,” Traci said.
“But her eyes speak 1000 words – you can tell when she’s happy and joyous, or wants to tell someone to go away.”
In September 2019 Maddy was referred to a palliative care team, which took a lot of “mental wrestling” to come to terms with, Traci said.
“We call them Maddy’s quality of life team.”
The family have been extremely careful amid COVID-19 to protect her vulnerable immune system, as she is particularly susceptible to pulmonary aspiration – breathing vomit or fluid into her lungs.
But the cheeky and happy teen celebrated her 15th birthday on June 2 despite the odds against her.
“It’s a credit to the inner strength that she has. She keeps fighting,” Traci said.
Traci informed the Independent on Wednesday that Maddy’s condition had improved after treatment and that the family planned to return home.
“But as quickly as Maddy can get well, she can become unwell,” she said.
The family hoped to make “some really beautiful memories” with her as restrictions ease and the weather improves, Traci said.
So Maddy’s cousin Jacqueline Timberlake started a campaign, which raised almost $11,000 in just four days.
“We’re overwhelmed and incredibly humbled by the support of so many people in such a short period of time,” Traci said.
“I read the donors’ messages and look at their names and think, ‘I don’t know these people’.
“Everybody’s been hit hard but it doesn’t seem to have stopped people wanting to help.”
If the worst happens, Traci plans to use any remaining funds to pay for Maddy’s funeral and to donate to charities that have helped over the years.
But she is staying positive for herself, her family and, most importantly, Maddy.
“We would like to do as much as we can to give her some life experiences that she’s never had,” she said.
Jacqueline said she hoped to relieve some of the stress on her aunt and uncle.
“It’s really traumatic and horrible for them,” she said.
“We’ve always known that Maddy wasn’t going to live forever. For us, that reality is really starting to sink in and it’s really sad.
“I thought she wasn’t going to make it till Christmas last year but she just keeps hanging in there – she’s a real fighter.”
She wanted to continue seeing her cousin’s “beautiful smile” and for Maddy to spend as much time as possible with her parents and beloved older brother Josh.
“The minute Josh walks into a room she just explodes with happiness,” she said.
October is Rett syndrome awareness month. To donate to Maddy’s family: gofundme.com/f/our-earth-angel-maddy
