Six-week-old baby believed to be youngest person with aHUS

Click to play video: '5-week-old baby shows signs of aHUS'
5-week-old baby shows signs of aHUS
Parents of a 5-week-old baby boy say it's believed their son has the rare disease, aHUS. It's the same disease where a costly drug to cure it is not covered in B.C. Catherine Urquhart reports – Nov 17, 2017

“It’s been kind of moment by moment.”

That’s how Joel Reimer, the father of baby boy Harbour Remier, who has atypical hemolytic uremic syndrome (aHUS), takes things every day as he tries to keep his son alive.

WATCH: UBC student makes desperate plea to provincial government to help save her life

Click to play video: 'UBC student makes desperate plea to provincial government to help save her life'
UBC student makes desperate plea to provincial government to help save her life

While UBC student Shantee Anaquod and her family fight for coverage for her medical needs, another young life is struggling with this disease.

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At just a few weeks old, Harbour is believed to be the youngest person with aHUS that doctors know of.

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The baby boy’s story emerges around the same time that UBC student Shantee Anaquod, who also has aHUS, and her family fight to have her medical needs covered.

Things are complicated for Harbour — he’s still too young to be treated with Soliris, a drug that’s approved by Health Canada, but isn’t covered in B.C.

“The treatment is up in the air over what he can even handle, but the fact that if we require that type of medication, that we can’t get without government funding,” Joel said.

“And if they don’t, they’re in a standoff right now with the medical field — it’s pretty shattering to think of that.”

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aHUS is a rare autoimmune disease in which the kidneys stop working, among issues related to vascular problems and red blood cell counts.

Right now, Harbour is undergoing as much treatment as he can handle at his young age.

“They have started him on something called plasma therapy, so that is one form of treatment,” Joel said. “Now he may be required to do that for the rest of his life so that’s why we’re praying for a miracle.”

A GoFundMe page has been set up for Harbour and his family, saying the boy is “being monitored around the clock …” and “… even the best case scenario would most [likely] have Harbour in hospital for a number of weeks at minimum, with various levels of outpatient care.”

The page isn’t looking to gather funding for treatment, but to raise $20,000 to support Harbour’s family while they focus on his care.

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