Adelaide family fights against rare illness

Alicia Violante is fighting back against the genetic disorder she was born with and dedicating her
life to raising awareness for Hereditary Hemorrhagic Telangiectasia in her brother’s memory.

Alicia Violante lives with HHT, a rare condition.
Alicia Violante lives with HHT, a rare condition.

Hereditary Hemorrhagic Telangiectasia (HHT) is a hereditary disorder which affects major organs,
causing the blood vessels in them to build up pressure and potentially burst.

The 21 year old, who was only 14 when she discovered she had the condition said she didn’t really understand the severity until her brother Matthew died suddenly in 2011 from HHT related

“When I was younger, I couldn’t do netball training or be outside in the heat too long but never knew why so when I found out I had HHT, it made more sense. My grandmother died from it, my mum has it and it took my brother too,” she said.

The bright, young UniSA student studying psychological science is working towards transferring into Laboratory Medicine to dedicate her life to research and finding a cure for HHT.

“I want to help find a cure, get into the field and research more about genetics and what patients need. It wasn’t until Matty passed away that I realised I wanted to be in the medical field and make a difference; living with HHT motivated that,” she said.

Following Matthew’s passing, his older sister, Sara Taji (nee Violante), Alicia and their family established “Matty’s Soldiers” in his honour to raise funds and awareness for HHT research.

Violante sisters: Sara, Alicia and Vanessa.
Violante sisters: Sara, Alicia and Vanessa.

Since forming the group, they have raised more than $60,000 and Sara has been named Holdfast Bay’s Young Citizen of the Year this year in honour of her contribution to the cause.

“Matty wanted to join the army but because they didn’t know what HHT was, they couldn’t take him so we formed the army Matty’s Soldiers to raise awareness and money in his memory. Now he can finally be in an army,” Sara said.

Matty’s Soldiers are the only HHT fundraising group in Australia and all monies raised go to the Australian HHT Centre at Royal Melbourne Hospital.

For the Violantes who all work together at their family owned shop in Newton Seafood Works, supporting each other and working for the cause keeps them motivated.

Recently, through a black tie event, the family raised over $30 thousand dollars for HHT research; as a result, the Royal Melbourne Hospital is able to hire staff and extend their research facilities.

Alicia Violante recently celebrated her 21st birthday by being nominated for the Pride of Australia Medal.

The Violante family continue to fight against HHT every day.

Story by Libby Parker

Photos courtesy of Sara Taji