Five-month-old Maya has had a bumpier start than most Dunedin babies, but her parents hope community fundraising efforts will help their daughter thrive.
At birth, Maya was diagnosed with cystic fibrosis — a life-threatening genetic disorder that causes thick mucus to build up in the lungs, pancreas and other organs.
The Palmer family and the family of 5-month-old Aria Connor, who was also diagnosed with cystic fibrosis as a newborn, will be the recipients of the annual Spartans fundraiser next month.
On February 14 and 15, the Spartans are hosting a golf tournament and a rugby tournament to raise funds for the ongoing care of the two babies.
Mrs Palmer said she had worked through a feeling akin to grief after Maya’s diagnosis.
"Cystic fibrosis is a life-threatening disease. It doesn't have a cure, but us being upset about it and pushing it to the side doesn't change the fact that she has it," she said.
"It will be a pretty scary thing to approach, but we'll just smother her in as much support as we can."
When Mrs Palmer was seven months’ pregnant with Maya — the couple’s first child — a scan revealed a perforation on the baby’s bowel.
The Palmers were referred to a foetal specialist in Christchurch for more tests, which determined they both were carriers of the gene which causes cystic fibrosis — "a [term] that we had never heard of", Mrs Palmer said.
There was no history of the condition on either side of their family.
"When it came back that we were the carriers, they gave us a 98% chance that she had cystic fibrosis ... that was pretty heavy to deal with."
For the baby’s safety, the couple relocated to Christchurch Ronald McDonald house for the remainder of Mrs Palmer’s pregnancy.
"I didn't see her until the next day, where she went into surgery on day one of life," Mrs Palmer said.
"She was two [kilograms], and they took seven centimetres of her bowel out and pulled the intestine to the outside to create a stoma."
At 4 weeks old — on what would have been her due date — Maya went into surgery again, this time to reverse the stoma and repair the perforation.
After six and a-half weeks in Christchurch Hospital and another three weeks in Dunedin Hospital, Maya was able to go home for the first time, but remained under the care of paediatric outpatients.
"We didn't have the chance to worry about how do you change a nappy, or she doesn't sleep through the night, because those are kind of nothing compared to everything else we had to deal with," Mrs Palmer said.
Now, Maya takes seven different types of medication — some eight times a day, some before each feed — and has twice daily physio sessions to shake mucus from her lungs.
Mr Palmer said people with cystic fibrosis were more vulnerable to illness — a cold could turn into a hospital visit, which had happened twice since Maya was discharged.
Money from the fundraiser would go toward a "life-changing" vest to vibrate Maya’s chest — shaking the mucus from her lungs and eliminate the need to for daily physio sessions.
The couple also hoped funding for the drug Trikafta — which had the potential to extend a patient’s life expectance from around 40 to about 60 — would be expanded for use in younger children.
Lara Connor’s 5-month-old daughter, Aria, was also diagnosed with cystic fibrosis as a newborn, as was her now 9-year-old son.
She said proceeds from the "incredible" fundraiser would go toward smaller, more portable medical equipment for the children so it was easier to visit family and travel.
• A Givealittle page has been set up for the two families and for more information on the Spartans rugby and golf tournaments, including sponsorship opportunities, contact: spartanshq2024@gmail.com.
