Kynan O’Connor diagnosed with fatal illness called adrenoleukodystrophy
A Sunshine Coast mum broke down in tears on an airport bus after a call from a doctor gave her news that her son only had years to live due to a mystery illness.
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A Palmview mother has retold the moment a doctor said her son had only two years to live during a phone call on an airport bus while her little boy was sitting beside her.
Kellie O’Connor received the phone call that would change her life forever on June 29, 2022 while she was on a bus with her son Kynan as they prepared to board a flight to Sydney.
The eight-year-old’s paediatrician told the Palmview mum her son had been diagnosed with adrenoleukodystrophy or ALD, a genetic condition that had no cure.
It damages the membrane that covers nerve cells in the brain and spinal cord.
Kynan was given one to two years to live with his eyesight, hearing and movement to rapidly deteriorate until he passes away.
Mrs O’Connor said her world was turned upside during that call as Kynan sat next to her while she cried.
“She said he will go blind, lose the ability to talk, walk and then he will pass away,” Mrs O’Connor said.
“I just said ‘are you kidding me’ and I cried and cried.
“My whole world fell down around me.”
Mrs O’Connor said Kynan had shown minor symptoms of lack of hearing, decreased movement and inattentiveness over the last two years, but had no idea it would lead to such a sinister illness.
In the weeks since the phone call Mrs O’Connor has vowed to get a second opinion as she and her husband Cage O’Connor prepared to travel to America to find alternative treatments for Kynan.
“He’s just such a beautiful and happy boy and I just can’t accept this diagnosis,” she said.
“We’re just riding a rollercoaster at the moment … why can’t they do something to just halt this.”
A GoFundMe has been made to help the O’Connors during this troubling time.
You can donate here.
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