Alex Church is a typical 18-month-old boy in many ways – happy, chatty, and laser-focused on grabbing the car keys. But the toddler’s immune disorder means his life will always be a little bit different – and mum Lisa Church is calling on the public to help him, and others like him, thrive.
The New Zealand Blood Service is holding a blood drive in Thames on November 25-26, and Lisa said she was sharing Alex’s story in the hopes that more people would step up to donate blood or plasma.
Alex has X-linked agammaglobulinemia (XLA), an inherited immune system disorder which affects his ability to fight infections.
“His white blood cells never develop into adult cells, so then they don’t ever develop the antibodies that the immune system needs to fight off germs and bacteria,” Lisa said.
“He has to have weekly infusions of plasma, which is a blood product, to basically boost his immune [system] each week.”
Alex will need the infusions for the rest of his life. While it’s part of their routine now, Lisa said the diagnosis was still scary for their family, and she worried for her son’s future. Luckily, he should be able to lead a relatively normal life.
“As long as you keep up with the treatment, it’s not going to impact him in any way,” she said.
“If people keep donating, he’ll be fine.”
Alex currently needs five millilitres of plasma weekly, though the amount will increase as he grows. The plasma is delivered by an automatic pump over 30 minutes, via a subcutaneous injection in his thigh.
“To start off with, I was doing it while he was feeding, and then it suddenly changed to him being more active, and so then it changed to putting him in a front pack, and then doing the injection and having the machine as a fanny pack kind of thing on me. And then now we just do it while he’s eating… I feel like every month it suddenly changes to finding a new way to do it,” Lisa said.
“It’s just one of those things you just have to get on and do it.”
Alex was diagnosed with XLA at just two months old. With a family history of the disease, Lisa said they were able to get a diagnosis relatively quickly.
“My twin brother was actually diagnosed with the same condition, and so it’s been easier for me to know what’s to come because I’ve watched [him] grow up and go through the same kind of treatment,” Lisa said.
“We were so lucky with Alex – because we knew my brother [had it], we were able to test for it straight away, whereas my brother went through being really sick as a child before they could find out what it was because it’s such a rare condition.”
The prevalence of XLA is estimated to be between one in 350,000 to one in 700,000 people. It almost exclusively affects males, and can cause severe issues like organ failure if left untreated.
The NZ Blood Service said the demand for plasma in New Zealand was increasing by 10 per cent each year, but only four per cent of the eligible population are blood or plasma donors.
The pale straw-coloured liquid, which is extracted from a donor’s blood, can be used to treat more than 50 illnesses.
“Each week we’re falling short of the 2100 plasma donations we need by around 250 donations. And in the next 12 months, we need 1500 more people to start donating plasma regularly,” a statement on the website said.
Lisa urged the people of Thames to consider contributing to the blood drive for Alex’s sake, and for others in need.
“I feel like everyone would know at least one person that’s needed a blood transfusion before.
“If it’s not themselves, it’s someone close to them.”
DETAILS: Mobile blood drive, Thames Civic Centre, November 25 from 2-7pm and November 26 from 8am-1pm. Call 0800 448 325 or visit nzblood.co.nz to book an appointment. Walk-ins welcome but space is limited.
