In less than three months, five-year-old Oskar has been brought back to life three times.
“You try to make as many memories as you can. I take thousands of photos and videos,” his mum Maria Raggio, 33, told Yahoo News Australia on Friday. “As hard as it is to say, there could be a day where that’s all I’ve got left.”
Weighing just 13kg, the “normally extremely happy child” has spent weeks in and out of the hospital over the last few months fighting for his life — a battle that tragically began at birth.
After welcoming their first child, Maria and Dough, who met in high school, noticed Oskar had “dysmorphic facial features” and a “large anterior fontanel”. “You could see his little brain when his pulse would go,” the mum-of-three recalled.
The genetic condition, which is not hereditary, is characterised by various physical features, intellectual disability, seizures and sparse scalp hair. While reports vary, Maria said it is her understanding less than 300 cases have been documented worldwide.
The life expectancy for the unlucky few with nicolaides-baraitser is “not bad”, the mum said, noting a woman with the condition who lived to the age of 33. However, “it’s more the complications that arise out of the syndrome that can cause issues”.
Aussie boy with rare disease resuscitated three times
Last year, Oskar was also diagnosed with complex epilepsy, meaning his body doesn’t always respond to the necessary medications properly.
“Since then it’s been a whole new ballgame,” Maria told Yahoo. “We’ve really struggled with that. He’s been in resuscitation because of his seizing three times [over] 10 or 11 weeks.”
The 33-year-old support worker who has taken time off work to be by her son’s side, said the five-year-old was rushed to hospital with sepsis in November. “He then went into a constant seizure and they couldn’t get him out of it for two days,” she explained, adding he is now trialling different medications.
“The issue is he can start having a seizure and we just can’t get on top of it, so once he starts having one it just continues and leads to resuscitation.”
Despite recovering from sepsis, additional tests now show the young boy has myositis — which attacks health muscle tissue — in one of his shoulders, but further testing is underway.
“It is a lot and it’s pretty tough for him when he’s unwell,” Maria said of Oskar, who is non-verbal, utilises a feeding tube and wheelchair, and has been dubbed the “little big brother”. “He has a wicked sense of humour — he laughs and knows what were saying. He loves rap music — Drake is his favourite.”
Loved ones rally around family
Maria and Doug have vowed to give their son “quality of life over quantity of life”, which at times has been difficult, especially when seeing Oskar in pain while trying to “stay positive”.
The couple have also had to go from a two-income household to one as they try to navigate caring for Oskar at hospital and their other two younger children. “It can get difficult when we're in hospital because Doug has to take time off work to manage the other kids while I spend my time with Oskar, it does get really tricky," Maria said.
To help the family stay afloat and pay for medical costs the NDIS does not cover, loved ones have created a GoFundMe with the hope of raising $5,000.
“They hate asking for help and always try to manage everything themselves, but I think it’s time we assist them and take away some of the financial burden so they can focus on Oskar and get him back to full health ASAP,” the fundraiser’s organiser said.
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