Last year, Santa came a week early for a NSW couple with Ryan and Tori Boyadji welcoming a smiley baby boy.
But Isaac’s surprise arrival was quickly shadowed by “blotchy” rashes that covered his tiny body.
Tori, 27, and her husband Ryan, 30, had no idea how serious the rashes could be until their “healthy” son was diagnosed with leukaemia at just six months old.
Speaking with 7Life, the first-time mum says her little man is now one and has “spent the majority of his life in hospital.”
Watch video above of Isaac’s first year
The couple’s first baby, the Northern Beaches mum admits her pregnancy went off without a hitch.
After all the usual testing and genetic screening, the mum’s results showed no abnormalities.
So the excited couple began discussing names, getting the nursery sorted and Tori even started to “imagine what their baby would look like.”
So, when Isaac was born two weeks early, the parents were left in shock at his rash.
And at just two days old the family weren’t just hit with one diagnoses, but three.
Isaac’s blood tests revealed he had an incurable lung condition called Neuroendocrine Hyperplasia of Infancy (NEHI) which impacts his ability to absorb oxygen affectively.
So since day one, the newborn has been hooked up to an oxygen tank and monitor 24/7.
“The oxygen tank is like our second baby,” Tori laughs
“With his feeding pump and all the equipment, I feel like we have a portable hospital in the pram sometimes.”
And alongside of this, Isaac has also been diagnosed with Down Syndrome.
“I think we were both so shocked when Isaac was diagnosed with Down Syndrome because it was so unexpected,” she says.
“But it didn’t take long for us to realise it wasn’t a big deal at all and now we wouldn’t change him for the world.”
And when it came to that rash, the oncologist said Isaac didn’t “have Leukemia yet but, he might soon.”
Adding the newborn had a 25 per cent chance of developing the cancer.
Six-months later, the oncologist was right.
“I know it sounds weird… but I sort of thought Isaac would be in that 25 per cent, so I wasn’t surprised when we found out,” Tori confesses.
Getting a treatment plan in place the first step for the baby was chemotherapy.
So, just shy of his first birthday Isaac underwent his first bout medication.
Losing his gorgeous tuffs of red hair watching their son go through treatment was heartbreaking.
But Isaac is a little trooper.
“He is such a little legend, he is so happy all the time – it takes a lot of something to make him upset,” Tori smiles.
The staff at the Sydney Children’s Hospital have also taken a keen liking to Isaac.
“He is so full of beans and wins the heart of every nurse,” Tori says.
“They often come into his room and say ‘don’t tell anyone but he [Isaac] is my favourite patient’.”
Adding that their little “homie with an extra chromie” certainly knows how to work the room.
And whilst Isaac’s first birthday wasn’t exactly like the couple planned, he was still “one happy chappy” in his party hat at hospital.
The proud parents are in awe of Isaac and despite moving into the children’s ward full time, he continues to tick off every milestone.
However, sadly for Isaac the first round of chemotherapy wasn’t as successful as the doctors hoped, so he has been categorised as “high risk” meaning his next dose will need to be increased.
But Tori’s positivity hasn’t once shifted.
“There’s no point in getting down about it,” she says.
“We are hoping two or three more rounds of chemotherapy to kick it to the kerb and we will be home in February.”
Tori admits that her and her husband’s unwavering positivity is all thanks to the support from friends and family.
With Isaac’s grandparents living close by, Tori counts herself lucky she has family to lean on.
“I am in the hospital 24/7 and I see people who have no one and it must be so hard,” she says.
And with Isaac’s ongoing care, Ryan has dropped down to just three days of work to help support his wife in hospital too.
While the new family’s world might be in hospital, bills continue to pile up at home so Tori’s brother has started a fundraiser to help remove the financial burden during this time.
The new mum is also thankful for her close friends who provide her much needed respite too.
“They come in and just look after Isaac so I can step outside and get some fresh air, or when we can they take me out to lunch,” she smiles.