General News
30 July, 2024
Community to rally and raise funds for local teenager impacted by a rare genetic condition
Before she even started her own family, Amanda Conn had been raising funds for children impacted by genetic diseases — but until four years ago, she had no idea she was supporting a charity which could now help her 13-year-old son, Harry.
In 2020, Harry was diagnosed with a very rare genetic condition after countless specialists and doctors couldn’t identify why he had been suffering from severe allergic reactions since he was six months old.
“Harry was born with Hereditary Alpha Tryptasemia, which puts his body into spontaneous anaphylaxis, which means he is allergic to everything at any stage all the time,” Ms Conn said.
“We have lots of things that we know trigger him such as latex, eggs, nuts and insect bites, but then there will be things that he has come in contact with before, that could also put him into anaphylaxis.
“He can never be unsupervised, always has to be around adults that can administer adrenaline by EpiPen and that’s a constant worry.”
While Ms Conn was already supporting it, since Harry’s diagnosis, she has taken on a more active role and organised numerous fundraisers for Jeans for Genes Day.
The day — a Children's Medical Research Institute (CMRI) campaign — is marked by people wearing their best denim to raise awareness and has raised over $65 million towards genetic medical research since 1994.
This year’s fundraiser event at the O2Cafe inside IGA Maryborough on Friday, August 2 hopes to raise $1000 for the valuable cause, which would place Harry into the exclusive Jean-ius Club, linking him with researchers at CRMI aiming to cure his disease.
Ms Conn said this year’s fundraiser, which has already raised over $253, aims to bring awareness to the urgent assistance needed for kids like Harry across Australia.
“The fundraiser helps shed light on these very rare genetic disorders that lots of people don’t know exist and help the researchers get the funds to be able to see how we can crack the DNA that’s behind them and hopefully one day find a cure for all these kids,” she said.
“IGA Maryborough and the O2 Cafe have been amazing in supporting the fundraiser, they have collection boxes, all of the staff are going to wear jeans on Friday and there will be some special goodies happening like blue milkshakes and blue donuts.
“We would love if the local community could come down on Friday and support us and it’s about having a fun day and trying to raise as much money as we can.”
IGA Maryborough’s Kate Hoober said her personal connection with the family motivated her to contribute to the fundraiser in any way she could.
“We have always supported the locals that have supported us and this is a really good cause that shows that,” she said.
“We have known Harry, Amanda and the family for over a decade now and have seen what Harry and the family have gone through.
“Jeans for Genes Day is a good cause which is there to help kids like Harry live as normal a life as possible and possibly find a cure.”
Donations can be made at IGA Maryborough at the event, with some proceeds from doughnuts sold on the day also to be donated, or by scanning the QR code below.