A Queensland toddler who spent most of his life in a plastic bubble to stop him dying of infection has died in his parents’ arms.
Three-year-old Thomas Collins passed away in a Melbourne hospital where he had spent more than a year receiving specialist treatment for an immune system problem that meant the smallest germ could make him dangerously ill.
His heartbroken parents, Leah and Morgan Collins from Ipswich, had been desperate to fly him home to Queensland so the whole family could be together when he passed away.
Queensland toddler Thomas Collins, 3, spent 858 days in hospital. He died on Saturday
‘We tried everything to get home,’ his mother Leah Collins, 32, told Daily Mail Australia.
Tragically the coronavirus border restrictions prevented them flying home without two weeks’ quarantine – even though Victorian immunologists were willing to certify them covid-safe.
Now the family must wait for the Queensland border to open so they can hold his funeral.
Little Thomas suffered from Severe combined immunodeficiency disease (SCID), a rare hereditary immune system disorder where the white blood cells malfunction and are unable to make antibodies.
This prevented him from fighting off germs – the slightest infection would make him dangerously ill, with a stem-cell transplant the only possible cure.
Thomas spent 858 days in hospital and did receive a bone marrow transplant.
Ms Collins said Thomas had to stay in a specially pressurised room to keep the area sterile – which is why those with the illness are nicknamed as being ‘in a plastic bubble’ to keep them away from germs.
Leah and Morgan Collins (pictured right) taking their only child Tom out in his stroller. Tom had to be protected from all germs due to a rare condition disabling his immune system
Sadly a few weeks ago he developed an infection that needed brain surgery, which left him in an induced coma.
As time passed it became clear he would not recover.
‘It is with deepest sorrow and fractured hearts that we tell you of Thomas’s passing this evening,’ the Collins wrote on Saturday.
‘He passed peacefully in the arms of his parents.’
Ms Collins said they hadn’t heard anything back from Queensland Health despite begging to be allowed into the state to spend their precious final moments with Thomas surrounded by family.
She said they could have flown back to Queensland without an exemption but Tom would have died in quarantine, leaving the pair trapped in a hotel room with no support for the rest of the two-week isolation period.
‘We’d have had to stay (for two weeks’ quarantine) in the room where he died unable to go out for a walk or anything,’ she told Daily Mail Australia on Sunday.
‘We’ve just spent two-and-a-half years in a hospital room.’
Thomas was being treated in a Melbourne hospital, far from his Queensland home
Thomas contracted one last infection that meant he had to have brain surgery, but tragically he wasn’t able to recover from this last operation
WHAT IS SCID?
Severe combined immunodeficiency disease (SCID) is an inherited disorder, caused by a mutation in groups of genes responsible for fighting off infection.
It causes the white blood cells that fight off infection – the T-cells and the B-cells – to malfunction.
Infants with SCID usually have no T-cells in their blood, so even if they have B-cells they cannot make antibodies to fight infection without the T-cells.
Once the antibodies they get from their mother are gone, they have no defence against infection.
Symptoms include poor growth rate and diarrhoea.
Most infants are diagnosed in their first year of life and need a haematopoietic stem cell transplant to survive.
Source: Australasian Society of Clinical Immunology and Allergy
Daily Mail Australia understands that Queensland Health offered to help with emergency transport, but is not aware of why there was no exemption from quarantine on compassionate grounds.
‘We extend our deepest condolences to the Collins family at this difficult time,’ said a Queensland Health spokesperson on Sunday night.
‘Queensland Health has and will continue to offer every assistance possible to the family.’
Leah’s mother was able to make it down to Melbourne to support her daughter through her only child’s death.
Her father tried desperately to reach his daughter in time from the Sunshine Coast but wasn’t able to make it.
‘Our whole family has been fractured, separated,’ Ms Collins said.
The couple, are at the end of their emotional and financial reserves, having been through years unable to work, staying in hospital to care for Thomas.
They have a GoFundMe page that had been set up to try to help with the expense of getting Thomas home to die, but is now to help with funeral costs.
Leah and Morgan Collins now want to get home to Ipswich as soon as they can to hold their little boy’s funeral with their family at their side.
‘Our emotional bandwidth is completely depleted by trying to work through the bureaucracy, and we face another two-week quarantine when we get back to Queensland,’ she said.
‘Our child has to be waiting for his funeral. We’re waiting for the border to open so we can get home and hold his funeral.’
Ms Collins said they were supportive of the coronavirus restrictions as they were what kept their ‘little fellow’ safe.
But they had asked for an exemption on compassionate grounds, were certified covid-free and yet were still refused, despite being Queensland residents.
‘Immunologists here (in Melbourne) have said we don’t have covid,’ she said.
Ms Collins said they would try to make it back home by road and would leave before lunchtime tomorrow.
Daily Mail Australia has also asked Queensland Premier Annastacia Palaszczuk’s office for comment on why the Collins family could not previously be exempted from quarantine on compassionate grounds.
Queensland’s border restrictions have now been eased and anyone can enter the state without quarantine if they have not been in a coronavirus hotspot in the 14 days before their arrival.
Hotspots still include the entirety of Victoria and the 32 local government areas that make up Greater Sydney, ABC News reported on Saturday.
Thomas in the arms of his mother, Leah Collins. Leah tried desperately to help her son