Thomas Collins continues to fight on after spending 150 days at the RCH
Thomas Collins has spent more time inside some of the country’s biggest hospitals than most ever will. The two-and-a-half year old was diagnosed with a rare immunodeficiency disease, but refuses to give up.
VIC News
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For a boy who has spent more than 600 days straight in hospital, young Thomas Collins is as happy as can be.
He’s a boy who has to be kept in the “plastic bubble” of his hospital room, but who laughs like he is having the most fun in the world.
He’s a boy who has learnt to physically push away his Dad so not to burn the man’s skin with the residue of chemotherapy, but with who he still shares the strongest of bonds.
Thomas was born with a rare condition called severe combined immunodeficiency (SCID), a disorder that means his little immune system is as weak as they come.
SCID is caused by a mutation in groups of genes responsible for fighting off infection.
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It’s meant Thomas and his parents Morgan and Leah Collins, who are originally from Brisbane, have spent most of their time in and out of hospitals as their two-and-a-half year-old underwent endless testing.
“When he was six months of age he started getting infections, like colds and diarrhoea,” Mr Collins recalls.
“It took about seven months of repeated sickness and emergency departments … But he never got better, he just got sicker and sicker.
“All the tests that they were running he kept coming back negative.
“We got transferred to the Queensland Children’s Hospital where they had all the teams – they ran all the tests.
“Thomas was very unwell.”
Doctors realised Thomas was born without a whole “army” of infection-fighting immune cells – a deficiency only usually seen in patients with HIV.
“He just never had those cells immune cells,” Mr Collins said.
Mr Collins and wife Leah began Thomas on a gene therapy program to try and mend his genes, before they were transferred to the Royal Children’s Hospital.
In Melbourne they were offered a spot on a new bone marrow transplant trial.
Bone marrow replacements are the only treatment available to kids with SCID, but a donor has to be a near exact match – just like in cancer treatment – and patients first have to undergo chemotherapy to kill any unhealthy cells.
But neither Thomas’ parents, nor any strangers, were found to be a match.
“Fortunately we got on a trial where they could use one of the parents who were only a 50 per cent match – usually you have to be a 90 per cent match,” Mr Collins said.
“We had to send copies of Thomas’ blood to Oxford University for what I call ‘magic’.”
In January last year Thomas received the bone marrow transplant from Leah.
“And that went pretty well,” Mr Collins said.
“He didn’t have an immune system though so he didn’t have the repertoire to fight viruses. So he had a lot of complications.
“Leah’s immune system recognises Thomas as an intruder so he lost his skin and it attacked his liver.”
And when Thomas contracted a virus in February last year, teams worked quickly to get Leah into a lab and infect her blood with the same virus to use as a stand-in immune system.
Now, he receives two or three blood transfusions a week and has his chemotherapy administered “outside” his body so as to only target the “bad” cells.
“They have a machine that takes the blood outside of his body and does the chemotherapy and injects the drugs out of the body, then they can target just those cells [before putting his blood back].”
It has now been over 150 days since Thomas arrived at the RCH.
“The isolation is the hard bit,” Mr Collins said.
“We’ve had a four person isolation limit — me, Leah, and the grandparents who come down once a month.
“There’s a lot of lego and trucks.
“We have good days.
“But he’s probably the happiest little boy I know.”
Thanks for the work of the RCH, which is supported by this year’s Good Friday Appeal, Thomas can keep on fighting.