Giv­ing Richard’s life a lift

Mum hold­ing fundraiser event six-year-old who suf­fers from rare syn­drome

Mt Druitt - St Mary's Standard (East) - - NEWS - Tony Bos­worth

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

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