Deakon Wilmshurst wants to live life to the fullest, but a rare condition that restricts his airway and causes anxiety makes that hard. To help his breathing and calm his mind, Satan’s Little Helper sent him a care package.
In the grand scheme of things, Deakon can count himself unlucky. The 12-year-old from New Plymouth has a condition called recurrent respiratory papillomatosis, which means he has growths on his voicebox.
“It’s a two-in-200,000 condition,” explains him mum Brooke. “It started with nosebleeds, which an ear, nose and throat (ENT) specialist saw him for. He got tonsillitis a few weeks later and developed a croaky voice which never went away.”
A rare condition
Deakon’s breathing started to become ragged and, after some googling, Brooke was convinced he’d developed recurrent respiratory papillomatosis.
“Doctors initially said he had chronic asthma, but I was persistent with our ENT, who eventually caved and tested him for the condition. Turns out I was right!”
Deakon was rushed into surgery to remove the growths, a procedure that was repeated every two weeks. He’s closing in on his 30th operation, although an anti-viral trial has slowed the rate at which they regrow.
“The hospital administered an injection straight into his throat and it’s working,” explains Brooke. “When he was first diagnosed, he couldn’t last three months before he needed surgery again and we’ve nearly made it a full 12 months now. Without surgery, his throat would eventually close and he wouldn’t be able to breath.”
Surgery has left him with scarring in his airway. His voice is soft and raspy, while his airway is restricted. Despite that, Deakon is a determined lad.
Never say die
“He loves cricket, running and handball. He also wants to be a builder, so he’s refusing to let his condition get in the way of his life.”
Even with that positive outlook, it’s difficult for Deakon. He travels to Waikato Hospital every three months to check for growths and has developed severe anxiety.
“Sometimes it causes him to pass out and have seizure-like episodes. This has been diagnosed as vasovagal syncope (fainting caused by a reaction to triggers like emotional distress). The worst part is his ‘seizures’ are random and can happen without warning.”
Winter is also hard for him, as the cold air can restrict his airway further.
To combat those challenges, Satan’s Little Helper sent Deakon a weighted blanket and a vaporiser for his room.
A massive help
“The vaporiser has been really good. We’ve had it in his room and it helps clear his airway and unblock his nose.
“The weighted blanket has been amazing! He was having a breakdown the other day, so I put his blanket on him, which calms him down so much. He has it on his bed continuously, as it helps him fall asleep easier.”
Deakon will have this condition for the rest of his life but, with medical intervention, it appears to be on a more manageable path. And thanks to Satan’s Little Helper, he has something that can help with the symptoms too.
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