Giving Richard’s life a lift
Mum holding fundraiser event six-year-old who suffers from rare syndrome
A ST CLAIR mother is holding a fundraising event in Orchard Hills to try to raise up to $50,000 for a purposebuilt vehicle for her son, who is one of only nine children worldwide to suffer from a debilitating degenerative disease.
Anastacia Panagakos is the main carer for her sixyear-old son, Richard Abboud, who suffers from Aicardi-Goutieres syndrome.
The condition means Richard cannot eat or walk and will never be able to talk.
Of the nine known cases, Richard’s is the most severe, leaving him completely immobile and disabled.
Ms Panagakos is running a GoFundMe campaign as well as the upcoming fundraiser, which is being held with help from Penrith Rotary Club.
So far she has raised $17,000 but the vehicle she needs to help get Richard out and about – a Kia Carnival – will cost around $50,000.
“Since last November I have been receiving some practical help, thanks to the National Disability Insurance Scheme (NDIS), which has been in operation in Penrith since then,” Ms Panagakos said.
“It’s allowed me to have a break now and again.
“Emotionally – it’s been six years now – I have wrapped my head around it.
“Yes, it’s stressful and you have your bad days and it is emotionally draining seeing your son suffer.
“But now I have some support to help him.”
Richard is fed through a tube for 22 hours a day.
He also needs a nebuliser and oxygen to help him breathe.
The disease has had a devastating effect on Richard’s life, with damage to his brain, immune system and
It’s stressful and you have your bad days and it is emotionally draining seeing your son suffer
skin and it ultimately means he will never have the chance of any normality in his life such as running and playing with other children.
The fundraising event will be held at the Masonic Hall, Homestead Rd, Orchard Hills, on Sunday, October 30, from noon to 5pm.
It will feature a sausage sizzle, jumping castle, music, a silent auction, raffle and Superheroes truck.
Entry is free but Ms Panagakos encourages anyone attending to make a donation to assist her in buying the vehicle to support Richard.
The GoFundMe campaign can be found at gofundme.com. Search for “Richard’s Life and Everyday Battle”.
Richard Abboud suffers from a rare, incurable syndrome. Picture: Peter Kelly