‘You don’t plan for grief of this kind’: father of baby who died of aHUS speaks for first time

Click to play video: '5-week-old baby shows signs of aHUS'
5-week-old baby shows signs of aHUS
WATCH: 5-week-old baby shows signs of aHUS – Nov 17, 2017

The B.C. father of a five-month old baby that died of a rare disease is speaking for the first time.

Harbour Reimer was diagnosed at five-weeks old with atypical hemolytic uremic syndrome (aHUS) back in November.

It’s a rare autoimmune disease that attacks the kidneys and causes problems with red blood cells and blood vessels. At the time, he was believed to be the youngest person ever diagnosed with it.

Young Harbour had been receiving treatment with Soliris, a drug that has shown promise in reversing the effects of the disease — but tragically passed away last month.

On Friday, his father Joel Reimer took to Instagram to open up about his loss.

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“I miss my son. Four weeks ago was the worst day of my life. Losing him feels like losing a limb,” he wrote.

Speaking with Global News, Reimer said that Harbour’s passing caught the family by surprise.

“You don’t plan for grief of this kind,” Reimer said.

View this post on Instagram

I miss my son. Four weeks ago was the worst day of my life. Losing him feels like losing a limb. . We hold onto hope in Jesus, even when physical healing doesn't come and tragedy rattles our bones. We don't tell God, "It's not fair", because that implies we are somehow immune to hardship or real life. Frankly, we are all in the same boat of needing his mercy and grace each day. . If you are in pain today, I'm so sorry. I don't know how you feel. Sadness isn't a one-size fits-all sweater. It's a custom-made suit, because God made each of us completely unique. I am thankful He knows every part of our pain, and He is the ultimate comforter. . Jesus is our hope. Turn to him today. . #hope #onedayattatime #harbourjustus

A post shared by Joel Reimer (@joelreimermusic) on

“We had been in the doctor’s that previous day and he seemed to have a tougher night. And we took the necessary precautions to check up what we thought it would be, and he ended up falling asleep okay… and he just didn’t wake up.”

Reimer said Harbour had had his regular infusions of medicine within 48 hours of his passing, and that doctors still aren’t sure what happened to him that night.

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READ MORE: It costs $750K per year to treat her rare disease, and B.C. doesn’t cover the cost

He said he and his wife are now taking things one day at a time.

Joel and Brandi Reimer with son Harbour.
Joel and Brandi Reimer with son Harbour. GoFundMe

“This is our story we found ourselves in, and we just want to hopefully be an encouragement to others who are going through tough stuff, because grief is unique and hard and no one should go through it alone.”

Reimer added that his family is grateful for everyone who has reached out with their thoughts and prayers.

Harbour was one of several high-profile cases involving aHUS. Last fall, a UBC student fought — and won — a public battle with the province over coverage for the drug, which can cost as much as $750,000 per year.

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