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Saturday, September 19, 2020
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Twins search for path to recovery

For Oscar and Felix Stewart, life as two-year-old’s is a little bit different.

The Newcastle-based twins have an undiagnosed rare genetic neurological condition that, devastatingly, is likely to result in a shorter life expectancy.

Mum Melissa Caelli says the boys are still very reliant on herself and dad, Matthew Stewart.

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“They are two-and-half-years-old, but they have a global development delay which means, developmentally wise, they are about six months old,” she says.

The boys are unable to stand or walk, so they roll or commando crawl to get around.

“It’s challenging for them, but they are very happy and laid back beautiful little boys,” Melissa says.

“The reality of it is, in terms of what to expect in the future, we live under a big question mark. 

“The specialists and doctors have all advised that they expect them to regress at some point and their condition is expected to shorten their life expectancy.”

The family’s team of doctors, including staff at John Hunter Hospital, have completed a genome and exome test on Felix’s DNA after an MRI, lumbar puncture, and urine and blood testing last year.  

While the MRI showed that Felix had less white brain matter than he should, the tests did not lead to a diagnosis.

Oscar is set to undergo the same tests later this year to see if they can indicate anything different.

The team hopes that, because he is a little bit older, something may show up.

Melissa Caelli, Felix Stewart, Oscar Stewart and Matthew Stewart. Photo: Lanelle Lee Chin

While Oscar and Felix receive funding under the National Disability Insurance Scheme (NDIS) to purchase equipment and fund therapies, there are some added costs that it doesn’t cover.

To help them through this struggle, their close friend Annette Ferguson, who played matchmaker for the couple, decided to start a GoFundMe page to raise money for the family.

“They’ve both been doing [it for] so long on their own and they aren’t the type to ask for help,” Annette says.

So far, more than $8,000 has been raised for the family and every single cent will go towards giving the boys everything they need.

Melissa says she is overwhelmed by the response.

“We just want to give them the best life and opportunities we can,” she says.

“Our goal as a family is to remain positive and hope for the best.

“It means that we can get them toys and equipment as we need them.

“We can pay for any tests needed to help in the hunt for a diagnosis [and] for any specialists required.

“It means that we are prepared if the boys take a dramatic turn.”

She adds that the boys have been advancing their development more than ever lately and says it is exciting to watch them grow.

“We may prove them all wrong yet,” she says.

To donate to their fundraiser, go to the Help for Oscar and Felix GoFundMe page.

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