9 June 2017

Heartbreak spurs life-saving donation

A Toodyay family's heartbreak at losing their much loved daughter and sister may soon be helping spare other families a similar tragedy.

From left, Clinic members Anne Hawkins, Nik Stoyanov, Helen Mountain, Nick Pachter with member of the Sofoulis family Wendy, Darryl, Zack and Matt (with photo of Alecia).
From left, Clinic members Anne Hawkins, Nik Stoyanov, Helen Mountain, Nick Pachter with member of the Sofoulis family Wendy, Darryl, Zack and Matt (with photo of Alecia).

Wendy and Darryl Sofoulis, along with sons Zack and Matt, travelled from the small Wheatbelt town to King Edward Memorial Hospital in Subiaco recently to present Genetic Services of Western Australia Director Nick Pachter with a $17,000 cheque. The money will be used to support a new cross-disciplinary clinic that is working to find answers for people with unexplained heart problems – potentially saving lives.

The donation came from the proceeds of fundraising efforts held in honour of Alecia Sofoulis, a vibrant 27-year-old who died unexpectedly and without warning of Sudden Arrhythmic Death Syndrome (SADS) in 2011.

Alecia was a chiropractor who regularly gave of her spare time to tend to injuries as a volunteer at two football clubs and a water polo club.

On 27 December 2011 she was getting ready for just such a volunteering job when she passed away suddenly.

“She had just had a nap and texted somebody at the club to get the address of the venue,” her mother Wendy explains.

“The venue was about a half hour from her place in Bellevue, but she never got there. Her boyfriend found her at home the next morning.”

Alecia’s death was a devastating shock, for her close-knit family who two days earlier had spent Christmas together and gathered again on Boxing Day for a picnic at Lake Leschenaultia.

The previous week they had celebrated Alecia’s 27th birthday.

Wendy says her daughter had been a generous, outgoing and hard-working young woman who had worked two jobs to put herself through university. She had horses and led a healthy lifestyle.

With no family history of heart problems, the death of her otherwise healthy daughter was an absolute shock. Five and a half years on they are still no wiser as to the exact cause of Alecia’s death though it is suspected she had a rare genetic condition.

The Sofoulis family is hoping that with the help of their donation, the cross-disciplinary clinic, which is organised through Genetic Services WA, will be able to continue to work to find answers for families like theirs – and potentially even identify people at risk so that preventative measures can be taken.

Wendy said the fundraising began after the local football team asked her family if it would mind them holding an annual match between Toodyay and Mt Helena in honour of Alecia’s dedication to the clubs. Alecia had strapped for both clubs.

Money raised from the annual football games and from the “Butterfly Ball” – which Wendy organised, three years’ later to mark what would have been Alecia’s 30th birthday – helped provide four defibrillators for Toodyay and $2000 for the SADS foundation, SADS Australia.

Keen to see further funds used to improve knowledge about Sudden Arrhythmic Death Syndrome, Wendy and her family organised another ball in 2016 and combined the proceeds of that ball with money from the annual football match to provide the recent donation to the clinic.