Nelson triplet battles rare disease
A Nelson couple's triplet joy has been clouded by a rare disease that has struck one and possibly two of their babies. SAMANTHA GEE reports.
First-time parents Zelia and Ricky Boyd battled the odds when they discovered they were having triplets, and again when their middle child Xavier was diagnosed with a rare disease that affects about one in two million children.
Now, they are awaiting biopsy results to find out if his brother Zander also has the rare cancer-like condition called Langerhans cell histocytosis.
Ricky ran out of work and rushed home as soon as he heard the news about Xavier's diagnosis last month.
"I broke down when I first got home, I was like, I don't want my son to die. That was the first thing I thought, when you think of cancer," he said.
Nine-month old boys Xavier and Zander are identical, with big brown eyes and wide smiles.
Their sister Harper has a cheeky grin, bright blue eyes and is not afraid to boss her brothers around to keep them in check.
Zelia said she knew something was up when Xavier developed a rash at four months that wouldn't clear up.
After a four-month battle that included appointments with different specialists, biopsies and tests, Xavier was diagnosed with Langerhans cell histiocytosis (LCH).
It occurs when excess immune system cells called Langerhans build up in the body. It can affect bones and in rare cases, the body's organs.
"These cells kind of overgrow and turn into tumours, it can happen on any organ in the body from the skin to the bones to the bone marrow," she said.
"We are lucky because we had obvious symptoms in front of us."
Only a handful of cases of the disease are reported in New Zealand each year, the couple were told the odds were one in two million. According to the United States-based Histiocytosis Association there is division among experts whether it is an immune dysfunction or a rare cancer.
"For it to be so rare, there are quite high numbers for Nelson. There are four, potentially five children that have it here," Zelia said.
Initially, the doctor thought it could be scabies but Zelia wasn't convinced. She took him to see a dermatologist for a second opinion but a diagnosis proved difficult.
"People said I noticed it because I was a nurse, it wasn't that, it was just mother's instinct," Zelia said.
Xavier's diagnosis was followed by a full day of testing to check it hadn't spread beyond the rash. Thankfully, it hadn't, but waiting to find out was the hardest part.
"We knew what we were dealing with so we could cope a bit more," she said.
Two weeks ago, when Zander came up with a spot and Zelia straight away had a gut feeling it was LCH.
"I had a bit of a meltdown on Friday when we got Zander's biopsy done, but so far so good, we got it early so that's the positive," she said.
They will know next week what the results will be.
The couple were in the process of doing up their home before the triplets arrived and they decided to start a Givealittle page to help raise funds for a ventilation system for their home to help keep the triplets warm and dry through winter.
They were reluctant to do so, but were encouraged by family and friends who wanted to be able to donate.
"Basically at the moment our goal is to boost up their immune systems so then their bodies can naturally fight it as well," she said.
They were thankful for an offer from Glen Martin from GM Electrical who had assessed their home for a smart vent system and offered to install it for free to help reduce the costs.
Not much is known about LCH and the couple have travelled to Christchurch to talk to doctors about Xavier participating in a research trial that will monitor the disease.
"It is kind of exciting in the medical world because they haven't had identical twins with it, that we understand, so they may be able to find a gene that would be able to diagnose it in the future," she said.
The Givealittle page for the Boyd family can be found at Givealittle.co.nz/cause/warmanddry.