A young boy has died in a Melbourne hospital after battling a rare disease for most of his short three-year life.
Thomas Collins, who has also been referred to as the “bubble boy”, was diagnosed with Severe Combined Immunodeficiency (SCID) in August 2018 at just 13 months old.
SCID is caused by gene mutations and made Thomas’s immune system almost non-existent and open to serious infections.
Because of this, the young boy spent most of his time in a protective bubble.
After spending more than 850 days in hospital, Thomas died in his parents’ arms on Saturday.
The couple, Leah and Morgan Collins, had travelled to Melbourne earlier this year so their son could undergo treatment but got stuck in the state during the Covid-19 pandemic.
They pleaded with the Queensland government to grant them a reprieve from quarantine so he could pass away at home, but they did not receive a response in time.
“Despite our best efforts, we were unable to get him home to Queensland,” Leah wrote on a Facebook page dedicated to Tom.
“We understood the potential conditions were very distressing and would have separated our family during transport,” she said, adding that Thomas wouldn’t have survived a 14-day hotel stint.
“We chose to do what our son needed most, which was to be with his parents in a peaceful environment to the end. We were able to do that for him.”
In the past few days, Thomas developed an infection on his brain and was placed in a coma so he could undergo surgery.
The family are now faced with either returning to Brisbane and quarantine for 14 days while grieving the loss of their son, or wait and pass through via NSW.
Leah and Morgan have been unable to work due to Thomas’s illness and spent a lot of money temporarily relocating to Victoria, friends said on a GoFundMe page for the family.
“They have taken turns living in the hospital with him, away from their family and loved ones,” Carly Bain wrote.
“On the rare occasion Thomas was allowed out of hospital, they took on the role of doctor and nurse, as well as parent.”
They now face the cost of a funeral and quarantine.
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