General News
5 August, 2025
Jeans for Genes fundraiser to support teenager impacted by rare genetic condition
Every day could be life threatening for Harry which is why he’ll join his mum, Amanda Conn, with the support of his loved ones to fundraise for groundbreaking genetic research.
Imagine the world wasn’t built for you. That nearly anything you touch or breathe in could cause a life-threatening reaction. From your toothpaste, to your clothes detergent, your food, or other people’s choices — they all could kill you.
That’s not a hypothetical for Amanda Conn’s son Harry. It’s every day.
Five years ago, Harry was diagnosed with a rare genetic disease, the first in Australia, called Hereditary Alpha Tryptasemia which means his body can go into spontaneous anaphylaxis.
“He is allergic to everything at any stage all the time,” Ms Conn said.
It’s Harry’s reality, one many medical professionals know so little about they refuse to treat him, and one without any cure.
“It’s just because his body is so rare and there’s not enough research,” Ms Conn said.
“It’s between whatever doctor is willing to say yes and me to try to find as much research as we can and put safety mechanisms in place.”
The puzzle that is Harry’s body, and those like him, is why the Conn family are fundraising again this Jeans for Genes Day.
This Thursday, August 7, they will be at Maryborough IGA and O2 Cafe trying to raise money for groundbreaking genetic research.
Last year they raised nearly $5000 contributing to the Children’s Medical Research Institute (CMRI) campaign which has raised $65.7 million since 1994.
“[Last year’s support] had me in tears. I was gobsmacked,” Ms Conn said.
Beyond the fundraising Ms Conn hopes the community take this opportunity to learn more about the condition.
“Just educate yourself on how unique some of these conditions are and the impact that it can have on a physical body let alone a child,” she said.
“It’s just about not having judgement and being open to learning about new things.”
Simple things are difficult for Harry. When he needs a tooth filling, but is allergic to anaesthetic, his family are left considering their options.
“It’s just trying to still get the treatment but manage the symptoms of what his body is going to do,” Ms Conn said.
Having to authorise doctors to experiment on her son, knowing he’ll likely have an anaphylactic reaction, but still needs the treatment has taken its toll.
“As a parent it’s hard ... it’s stressful as hell and you think why me but there’s other people worse off,” Ms Conn said.
As Harry gets older he better understands the risks that he could have a life-threatening reaction during all sorts of medical appointments — it can be scary.
“He’s starting to get to a point where he says no I don’t want to try and we have to respect him on that but also try and find a way that we can still get the medical treatment that he needs,” Ms Conn said.
Although there are now two other people with the condition in Australia, Ms Conn explained, their symptoms and responses to treatment are very different to Harry.
“You can’t go, we know there’s another person and we mimic that, because they don’t,” she said.
Something as simple, if uncomfortable, as puberty is life-threatening for Harry.
At almost 15-years-old, his reactions have only gotten more severe with no sign of stopping — although they are hoping he’ll grow out of it.
In the meantime, his reactions are requiring more and more doses of adrenaline to bring under control — an experience that can take more than a week to feel normal after.
“But his body can go into anaphylaxis consecutively for up to 72 hours after the initial time so then you’re constantly hovering, he can never be alone, because you don’t know when that’s going to happen and how much adrenaline and medical intervention he’s going to need,” Ms Conn said.
But for a rare condition, where they have to learn as they go, Harry at least has his family in his corner.
It was Ms Conn’s determination, after seeing a TV documentary on medical mysteries, that got them their diagnosis.
“It was like a penny dropped. It was like ‘wow, there are other people in the world whose bodies are doing this’,” she said.
Up until the diagnosis specialists told them there was nothing wrong or they couldn’t find an answer — it wasn’t good enough for Ms Conn.
“They said that to the wrong parent. Stubborn runs in my genetics and I’m glad that it did because it just pushed me further to find somebody that could help,” she said.
Receiving the diagnosis meant Ms Conn wasn’t the “crazy parent” but it was bittersweet.
“It was heartbreaking but also affirming at the same time,” she said.
That was five years ago now. It has turned every birthday into a particularly special occasion.
This year, like every year, Ms Conn and her mum will open a “cheeky wine” and celebrate another year that Harry made it — despite the challenges — as a unique kid with a unique obstacle.
Donations can be made in-person this Thursday or online at https://fundraise.jeansforgenes.org.au/fundraisers/FightingHATSforHarry