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Wish for Wallan boy with rare condition

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Max Davies
Max Davies
Max is a journalist for the North Central Review. He joined the paper as a cadet journalist in 2021 and graduated from La Trobe University in 2023. He takes a keen interest in motorsport and the automotive industry.

A Wallan family is in need of a modified vehicle to support their son who lives with a rare genetic condition.

Mother Louise Pryde has started a fundraiser to purchase a vehicle needed to transport her son Axel, who lives with the condition known as IQSEC2.

The Review reported Axel’s diagnosis in March 2021, when he first began showing signs of developmental delays and concerns rose that he had the same condition as his twin sister Aria – who died in May of that year.

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Cleared of the vanishing white matter disease, VWM, that affected Aria, Axel was instead diagnosed with IQSEC2 – a condition causing intellectual delays and can result in seizures, loss of motor functions and behavioural abnormalities.

Only about 100 people worldwide are known to have IQSEC2.

Now four years old, the Pryde family are in need of a new vehicle that can be modified to fit a specialised wheelchair – designed specifically for Axel pending approval from the National Disability Insurance Scheme, NDIS.

Ms Pryde said Axel was getting to the stage where he had ‘outgrown’ his current disability car seat.

“There’s literally no room in our current car for him to be in there comfortably and safely,” she said.

“He’s just getting too heavy for myself to carry him in and out of his car seat, as well as lift his disability pram, which weighs over 25 kilograms.

“It’s becoming a strain on myself and also for Axel … we just don’t know how much longer we can go without having the car where we can push him in and just strap him.”

“Since coming off the CBD oil 6 weeks ago Axel’s seizures have increased dramatically and he is having anywhere between 15 – 30 a day.” – December 2 update via Facebook

The Pryde family have started a GoFundMe to raise funds to purchase a new eligible vehicle, the cost of which is estimated to be about $50,000 with modifications expected to be carried out and paid for through the NDIS.

Ms Pryde said there were multiple factors in converting a car to be accessible, including the age, size and type of car, however there were uncertainties over the vehicle’s warranty and what will or will not be paid for by the NDIS.

The family’s current car is not eligible for modification.

“We’re just trying to get traction with [the fundraiser] to see if we can get a bit of help because unfortunately we’re not in the right place to be able to buy one ourselves,” Ms Pryde said.

“The sooner the better, but we can get by because we’ve still got a little bit of time in the current situation.”

Despite his condition, Ms Pryde said Axel was ‘not doing too bad’ although he was making frequent visits to doctors and hospital for treatment and medication – making the family’s access to a car a necessity.

To view the fundraiser or to donate, visit gofund.me/80e97082.

Keep updated on Axel’s condition by visiting the Fighting Rare Iqsec2 & VWMD Axel & Aria Facebook page.

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