Meet 2020’s inspiring Telethon Stars Nora and Eamon
Nora Holly and Eamon Doak are two Perth kids who have faced adversity from a very young age.
Today their smiles, energy and zest for life are testament to their resilience and why they are an inspiration to us all.
The stories of this year’s Little Telethon Stars are perfect examples of why the money raised by Telethon is so important for sick children in WA and beyond.
Nora is now a bundle of energy with an infectious laugh. But it was very different four years ago when she was struck down with cancer.
She was just eight months old when her mother, Naomi, noticed she had stopped moving her legs and rushed her to hospital. Within 24 hours, Nora had become paralysed from the neck down.
Doctors discovered a fist-sized tumour crushing her spinal cord while one of her lungs had grown around the mass.
Nora is one of around half a dozen children who develop neuroblastoma, a cancer that develops from nerve cells, in WA every year.
After surgery to remove most of the tumour and six months of chemotherapy to treat the remainder, Nora has been in remission for four years. Fortunately, she remembers little of that traumatic time, unlike her parents, Naomi and Hannes.
“She suddenly went to not being able to move. We weren’t guaranteed that she would ever walk again because they didn’t know what damage had been done to her spinal cord,” Mrs Holly said.
Nora’s movement returned over the next few months though she had to relearn how to roll over, crawl and stand. She will be considered “cured” next year but the spectre of cancer still hangs over the family.
“It will be something that we will live with for the rest of our lives,” Mrs Holly said.
The family is recovering from a terrifying scare earlier this month, which began when Nora complained of discomfort in her spine. Mrs Holly said they endured 12 days of fearing the cancer had returned before tests revealed it had not.
“She’s proved every time that how strong, courageous and feisty she is,” she said.
Their relief and joy was boosted by the announcement that Nora will be one of this year’s Little Telethon Stars.
“It’s really lifted our family’s spirit and because we were all feeling unsure of what the future held,” Mrs Holly said.
Nora and her schoolmates were told the news at a special assembly at Mary’s Mount Primary School in Gooseberry Hill, where Fat Cat made a surprise appearance.
Perth Children’s Hospital head of oncology Nick Gottardo said there was only a 50 per cent survival rate for children with high-risk neuroblastoma, but Nora’s type was intermediate risk and had a much better prognosis.
Eamon Doak has an ambition to fly an aeroplane, which is not an unusual dream for a child, but most kids do not have his challenges and an uncertain future.
The seven-year-old, from Banksia Grove, has Usher syndrome, which saw him born profoundly deaf.
Tragically, he faces losing his eyesight by the time he is a teenager.
Eamon also has delayed development and balance problems, but he does not plan to let any of it hold him back.
Like Nora, Eamon found out he had been selected as a Little Telethon Star at a surprise assembly at his school, St Stephen’s in Carramar.
“I was shy but excited,” he said.
Eamon’s parents Andrew and Bronwyn are helping him to fulfil his ambitions while he can, such as taking him for sessions in a flight simulator. Mr Doak said it was an honour for Eamon to be this year’s Little Telethon Star.
“I don’t think it’s quite hit home yet exactly, the responsibility and what he has to do, but I know he will roll with it and he will step up,” he said.
Eamon was invited to Perth Airport to have a look inside a real cockpit on the runway. He did not hold back in grilling Captain Kyran Florisson, of Alliance Airlines, who showed him around his cockpit.
The Doak family migrated to Australia after suffering unimaginable tragedy. Eamon’s older sisters Alex and Madison, aged 10 and seven, were killed in a plane crash in South Africa in August 2011.
Eamon and his younger brother, Kealan, were diagnosed with Usher syndrome at the ages of five and three in 2018. Both boys have fortunately managed to have their deafness corrected by cochlear implants, but will gradually lose their eyesight to retinitis.
Speaking about the loss of his daughters, Mr Doak said he and his wife still had good days and bad days, but their remaining children’s needs kept them going.
“We’ve had many rough times,” he said. “They’re happy and healthy otherwise, so we’re not going to sit in a corner and mope about it.
“We will hopefully create some cash and get some research done.”
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