Matteo Farinaro was only three-months-old when he started having his first seizures – and he continues to do so every day.
The soon to be six-year-old suffers from a rare mutated gene causing multiple seizures on a daily basis. Matteo is mostly incapable of walking and talking and he is also the only person in the world recorded with the mutated gene.
Matteo’s disability requires frequent travel. The family live in Peakhurst, close to a special needs school in Kogarah, while Matteo goes to Randwick hospital and his GP based in Liverpool.
The problem is his parents Belinda and Angelo need to constantly lift their son up and down from his wheelchair; a challenge that will become harder as Matteo gets heavier.
To combat this a GoFundMe page was set up for Matteo so his parents can make their car wheelchair accessible.
Only 27 days after the page was set up the $20,000 campaign goal was reached. They have now raised more than the expected amount - $23,660.
Mrs Farinaro said the car conversion will make things a lot easier. It is expected to cost $21,500.
“As a surprise to us my sister in-law created the GoFundMe page for the car conversion. It will be modifying the wagon part - so they'll take out the seats and we'll be able to wheel him straight in,” she said.
“The company doing the conversion is Right Price Conversions - they specialise in converting cars for people with disabilities.”
Matteo’s aunt Sarah Djoeandy who created the Gofundme page has been part of the family for a long time.
“Raised primarily in Casula, where my mother still lives, I grew up with Belinda's brother who I later married so I have been part of their family for a long time,” Mrs Djoeandy said.
“Belinda and Angelo rarely ask for help. I knew that Belinda and Angelo wanted to get their car converted but also how expensive it was. I wanted to try help get this money so that they wouldn't have to wait and I knew what a difference it would make to take away the financial burden.
“I'm so grateful that there is a platform such as GoFundMe to help people in need and I have always believed in the generosity and kindness of people. I was definitely grateful and overwhelmed with joy when we reached our goal in eight days.”
The family expressed how overwhelmed they felt about the communities support. The rest of the money will go towards intense physiotherapy for Matteo.
“Words can’t express enough how we feel. To save $21,500 on our own was near impossible so we were shocked with the outcome. We were saying we would be blessed if we could raise $10,000,” Mrs Farinaro said.
Matteo is a fighter, so with his strength he helps Angelo and I be the best parents we can be.
“He didn't get a diagnosis until 18 months ago. With technology and science they found a mutated gene but they don't know anything yet.
“It's hard because you have nothing to compare it to. But it another way it's good because we've learnt not to compare him to anybody. He’s going to take his own path and all we can do is support his needs.
“There are other kids that have seizures that are walking so we don't know [what the prognosis is]. He's come along way. The problem is he'll get some muscle gains and make progress but it only takes one hospital stay for it to be retracted again”.
Despite the challenges, Mrs Farinaro said they feel lucky to have Matteo as their son.
“We’re not scared to hide it – Matteo was an IVF baby. The specialist was based in Liverpool and he was born in South West private in Liverpool,” she said.
“It would be great to have a cure but we just have focus on today. Matteo is a fighter, so with his strength he helps Angelo and I be the best parents we can be.
“We didn't know someone so little and young could teach us so much - he is an amazing little boy. We are patient now and don't take things for granted. Life is hard with his illness but we feel blessed to have him.”