An Alberta family says a rare and potentially life-threatening condition means their young son needs a stem cell transplant and they’ve taken to social media so their plea for help reaches more people.
According to the Cacka family, their son Hudson has IPEX (immunodysregulation polyendocrinopathy enteropathy X-linked) syndrome, an auto-immune disorder that only 150 people across the planet are currently living with.
“It affects the immune system,” Louise Cacka told Global News on Friday. “So whenever Hudson gets a cold or the flu, unlike the rest of us, Hudson’s body fights it off a lot slower.
“But it doesn’t stop fighting and it attacks the rest of his body.”
The Cackas said they first discovered something was wrong when Hudson had to be rushed to Edmonton’s Stollery Children’s Hospital when he was just two months old.
“Ever since then, he’s been through a battery of tests,” Cacka said. “Pokes, prods, blood tests — different procedures.
“It was his pancreas not working properly, it was symptoms of celiac disease and later on he had kidney problems.”
It took nearly three years before doctors determined their son had IPEX syndrome.
According to the U.S. Department of Health & Human Services, the disease “affects only males and starts in the first six months of life.” A page on the U.S. National Library of Medicine’s website says “IPEX syndrome can be life-threatening in early childhood.”
Now three years old, Hudson is currently on immunosuppressants which leaves him vulnerable to getting sick. Cacka said the medication is only a temporary solution.
“There is a cure for him, and it is a stem cell transplant.”
READ MORE: Stem cell transplant for Edmonton man battling rare cancer on hold
Cacka said neither she, her husband or Hudson’s sister are a suitable match for such a transplant.
“It’s like winning the lottery,” she said.
“It would be one-in-a-million to be a match. It’s like finding your genetic twin.”
READ MORE: 4-year-old ‘superhero’ inspires with donation of bone marrow to twin baby brothers
The family recently held a donor drive and Hudson’s father — Steven Cacka — says “every single man that signs up between 17 and 35 is another chance and another hope for Hudson.
“If they can’t be a hope for Hudson, they can be a hope for some other kid out there,” he said. “There’s times that both Louise and I have been crying ourselves to sleep. You know, it’s been scary.”
The Cackas have started a GoFundMe fundraiser to help support the family when he does receive a transplant. The family has also started a Facebook page for people to follow Hudson’s journey.
To register as a donor – for Hudson or anyone else, click here.
–With files from Global News’ Sarah Kraus
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