David and Cheryl McKenna pictured with children Joseph, Emily and Isla are selling their lakefront acreage home to help fund medical treatment for Emily. Picture: Lachie Millard
Cheryl and David McKenna are hoping for a miracle as they sacrifice their coastal sanctuary to pay for lifesaving treatment for their daughter, who is fighting a fatal disease.
The couple has listed their spectacular 10-acre Peregian Beach property to raise $5 million to treat 18-year-old Emily’s RRM2B mitochondrial disorder.
Without it, the relentlessly progressive condition will soon take away her ability to walk, eat and breathe.
“Watching your child deteriorate over the past 10 years, and knowing there’s no way to stop that progression, as a parent you go through all the stages of grieving. We have been angry, we have been bitter…but to see her mental health decline with it has been the toughest part,” Mrs McKenna said.
Emily was diagnosed at age 8. Picture Lachie Millard
“She cries. She wishes she wasn’t who she was. In her mind, she is an ordinary 18-year-old who loves doing TikToks and shopping, but her body is deteriorating to that of a 90-year-old.”
Emily was diagnosed at eight years old. Her symptoms began with mild hearing loss and progressed to profound loss of hearing and vision along with degenerative muscle weakness. Before then, she was a flyer in a cheerleading team who loved to dance. Today, she relies on a wheelchair and a feeding tube, and her lung function is failing.
Unable to leave her daughter’s side, Mrs McKenna has become a full-time carer.
“She can’t put her own hair up, she can’t make herself a sandwich because she wouldn’t be able to spread the butter,” she said.
She is heading to fulltime wheelchair use
While her peers headed to Schoolies, Emily couldn’t graduate, her classes replaced by an endless round of hopeless medical appointments.
“We’ve been through all the different diagnoses. That’s the worst thing—you go to the doctor and they never just say, ‘Do this, this will fix it’.
But Emily’s fiercely independent spirit remains unbroken.
“Her biggest dream is to learn to drive and be independent,” Mrs McKenna said.
On her 18th birthday last month, Emily wore her intended high school graduation dress to launch the family’s charity, the Emily’s Garden Foundation.
Cheryl, Emily and David McKenna at A Night to Bloom, a gala to celebrate Emily’s 18th birthday and launch the Emily’s Garden Foundation. Picture: Supplied
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The $5m goal comes with a strict June deadline to fund bespoke US treatment.
Hope came with a ChatGPT search suggesting gene therapy could treat her specific mutation, leading them to US specialists through fellow Sunshine Coast parents Golden and Chris Whitrod, who sought similar treatment for their daughter.
The McKennas knew instantly how they would fund the fight, listing the 155 Clarendon Rd retreat they built for Emily and her siblings Joe, 20, Riley, 15, and Isla, 8.
Mrs McKenna said the journey had forged deep empathy in her children.
“They understand this disease is genetic. There was a one-in-four chance, and it got our one-in-four. It definitely has made us live in the present.”
Emily dreams of learning to drive and reclaiming her independence
Leaving the sanctuary will be difficult, but the choice was simple.
“I would be lying if I said it won’t be hard to pack up. We all love our house, but we just love Emily more.
“Emily feels guilty, but it’s just bricks and mortar. We can replace a house, we can’t replace Emily.”
The property, featuring a modern farmhouse, two self-contained residences, a studio, horse stables, and direct access to Lake Weyba, is marketed at $6.5m through Joel Hood and Jade Gleadell of Joel Hood Property.
Ms Gleadell said the acreage had attracted strong interest, adding it was an “absolutely unique cause” and a special experience to help the family.
The family’s spectacular Sunshine Coast property. Picture: Supplied
Inside the home at 155 Clarendon Rd, Peregian Beach. Picture: Supplied
For the McKennas, the booming Queensland property market is exactly what prayed for.
“When Emily was diagnosed 10 years ago, we prayed for a miracle,” Mrs McKenna said. “The fact that the equity in this house will probably be close to saving her life – it is our miracle.”
If they hit their June, Emily has plans to reclaim her independence, learn to drive, and move out.
But above all else, she just wants to dance again.
“She is the most resilient person I’ve ever met.
“If we can get her confident just dancing around the room with her family again… that is what makes her smile. That is what makes her happy.”
She loved to dance and was a flyer in a cheerleading team before her diagnosis
English (US) · 