Mother launches fundraiser to buy vehicle to transport son who has rare disability
LITTLE Richard Abboud is one of only nine people in the world who suffers from debilitating degenerative disease Aicardi-Goutieres syndrome.
The Standard
Don't miss out on the headlines from The Standard. Followed categories will be added to My News.
A ST Clair mother is holding a fundraising event in Orchard Hills to try and raise up to $50,000 for a purpose-built 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 six-year-old son Richard Abboud who suffers from Aicardi-Goutieres syndrome.
The condition means little Richard can’t 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,
The young boy 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 skin.
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.
It will run from noon to 5pm.
It will feature a sausage sizzle, jumping castle, music, a silent auction, raffle and Superheros 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”.
What is Aicardi Goutieres syndrome
■ Aicardi Goutieres syndrome is a devastating extremely rare, degenerative, incurable disease which affects the brain, immune system and the skin
■ The course of the disease is severe and progressive where death occurs in 25 per cent of patients before the age of 17
■ There are only nine known cases living with this disease worldwide
■ Richard Abboud’s family is asking for support to relieve some financial stress and enable them to buy new medical equipment as well as a car to be able to transfer him and accommodate his wheelchair when he needs to go to school, therapy and hospital
$355m loss: NSW worst pokie hotspots
This is where NSW pokie players have lost more than $355 million in four months. Search and check our interactive table to see if it’s where you live and how your suburb compares.
$330 more: ‘Ludicrous’ power bill hikes for 500,000 in NSW
An electricity retailer owned by the federal government has raised its NSW prices by a whopping 15 per cent. See if you’re affected and watch the video on how to get a better deal.