Blood donors for boy with extremely rare disorder ‘worth weight in gold’
On the day Jericho Ward was born, his mother Ellie had an inkling something wasn’t right.
Feeling no movement, she called the midwife and was told to head into hospital immediately.
“Within 15 minutes, there were 15 doctors in the room, saying ‘We need to get this baby out now’,” Ellie recalled.
Baby Jericho, who turned 2 in February, was transferred to Wellington Hospital’s Neonatal Intensive Care Unit that evening, where he spent 65 days and was diagnosed with phosphoglycerate kinase 1 (PGK1) deficiency.
The extremely rare inherited metabolic disorder, which impairs the body’s ability to break down glucose for energy in cells, has been reported in scientific literature in just 30 unrelated families around the world.
For Jericho, who also has cerebral palsy, part of his condition means he requires a blood transfusion when levels of haemoglobin in his blood deteriorate, typically on a six weekly basis.
It also means two or three hospital appointments a week, along with daily physio.
Ellie has had to quit her job to take care of him. On a blood transfusion day the pair spend all day in hospital.
As New Zealand marks National Blood Donor Week, Jericho’s family is acutely aware of the difference donors make.
Father Connor said Jericho’s transfusions were much more complex than what most people realised. His blood had to be matched with not just a blood type, but a subtype too – one that only a handful of people in the country who donate might have.
“Whoever it is that has donated that blood is absolutely worth their weight in gold, because every ounce of blood they’re giving is another day that we get with our son,” he said.
For the transfusions Jericho has an implanted port – a tube that goes from under his armpit through to one of the valves of his heart, which will need to be replaced as he grows bigger.
Doctors across the world take an interest in Jericho’s medical notes and his ongoing well-being. Connor hoped his treatment would set the standard for others born in the future with PGK1.
With a condition so rare, support from other families affected by the disorder was non-existent. .
“As horrible as this sounds, when Jericho was diagnosed about a year ago with cerebral palsy, it was actually somewhat of a relief for us because it was finally something that other people can relate to,” Connor said.
“Whereas with the genetic deficiency he’s got, there’s about five or six other kids in the history of the planet that have had this, one of which was 20-something years ago.”
Jericho’s condition also has an emotional load, and the family takes every day as it comes.
“It’s tough,” Connor said. “But I think it’s tough for any parent whose child is sick.”
Jericho can’t move himself or hold up his own body weight.
But he’s a happy kid with a beautiful sense of humour and a cheeky personality, Ellie said.
He’s learning to kick his legs and is “obsessed” with his hands.
“For a child that has had one of the hardest starts in life without actually dying, he is impossibly happy,” Connor said.
“He’s a massive motivation for me, because I look at him and what he’s going through, and go, if he’s got a massive smile on his face, what excuse do I have?”
More donors needed to keep up with demand
Every 18 minutes, someone in New Zealand needs blood or blood products, and around 30,000 people a year, like Jericho, have their lives saved or improved by blood, plasma and platelet donors every year.
But the New Zealand Blood Service says it needs more than 4000 new donors in the next year to be able to continue meeting demand.
NZBS said demand for plasma was projected to grow by more than 25% in the next three years – driven by the increased need for patients with autoimmune disorders using therapeutic solutions of concentrated antibodies.
To keep pace, the plasma donor database needs to increase by 11% over the next year, the service said.
Anyone wanting to donate can download the NZ Blood Service Donor app, visit nzblood.co.nz or call 0800 448 325 to donate.
By Catherine Hubbard, Nelson Mail
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