It's been a whirlwind 12 months for the D'Arcy family of Bega, after their third child Hugo was born with a cleft palate and a rare life-threatening genetic disorder called Severe Combined Immunodeficiency Disorder (or SCID).
The family has been in strict isolation after Hugo underwent chemotherapy and a bone marrow transplant at 10 weeks of age, in order to keep Hugo away from harmful microbes.
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Unfortunately, the treatment was not successful and after further testing Nikki and Andrew D'Arcy will most likely need to seek a Thymus transplant instead, only available in the the US or UK.
The thymus is an organ behind the sternum that helps 'T cells' mature - white blood cells essential to the adaptive immune response.
Unfortunately Hugo is unable to produce these cells himself, and the transplantation will aim to treat his immunodeficiency.
"At the moment we're just waiting and hoping he doesn't get EBV reactivated from the bone marrow, which is the virus that he needs chemo for before Christmas," Ms D'Arcy said.
"Then it's just a matter of finalising all the tests before going to the UK."
The community response to help ease the strain on the D'Aarcy family has been incredible, with over $37,000 already raised thanks to a campaign set up by friend Kathryn Mamone.
I'm completely overwhelmed and so grateful to be in this community during this time. From the people donating that we don't even know, to the people we do know that are extremely generous. To the cow fundraiser, it has blown us all away
- Nikki D'Arcy
The family has had countless trips to Sydney, lost work and taken on home schooling while trying to juggle work on their dairy farm, with strict isolation measures in place.
The trip to England poses a massive risk, as Hugo is severely immunocompromised, and bills have begun to stack up.
'Donate a Cow for Hugo' is the newest fundraiser, organised by neighbouring farmer Poss Otton who has set up auctions at Bega Saleyards for December 13 and 15, with all funds raised going to the D'Arcy family.
While it's not confirmed, Ms D'Arcy said the trip to UK was looking very likely, with final confirmation in January.
From there, Hugo will need a matching thymus for transplant, with a further 24 months of isolation afterwards.
Ms D'Aarcy had been stunned with the work of pediatricians and clinical care nurses at South East Regional Hospital, and said that Hugo is currently going well developmentally.
"They have been amazing and so supportive and helpful. We are so lucky to live in the Bega Valley.
You can donate to Hugo and the D'Arcy family by searching 'Hugo's Thymus Journey' on the gofundme page, or via the link - www.gofundme.com/f/hugos-journey-with-thymus-transplant-in-uk
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Sam Armes
Journalist reporting for the Bega District News and surrounds. Reach out about potential stories at sam.armes@austcommunitymedia.com.au
Journalist reporting for the Bega District News and surrounds. Reach out about potential stories at sam.armes@austcommunitymedia.com.au
