Arie and Joy Pekar are like any young couple with a new baby.
They've spent the last few months thinking of names. They read and learned about parenthood. They have no plans for their new son, who arrived June 23, other than for him to be "happy and healthy."
There's only one difference — little Benjamin's father is in desperate need of a kidney.
For the Dundas couple, life has reached a perfect storm of sorts. Two weeks before Joy gave birth to their first child, Arie, 35, began dialysis for a genetic kidney disease.
Initially, Arie thought his brother would be a suitable donor, but doctors ruled it out at the last minute. The Pekars have been searching for a live donor since December, but so far, no offers have come to fruition.
That means the family have two adjustments this summer — that of being brand new parents, and of life on the transplant list.
"It'll be very busy," Joy said. "Very good and very busy."
Arie, like his mother Ilana, has polycystic kidney disease, an ailment that typically leads to kidney failure in patients in their 50s and 60s. But like his mother, kidney failure has happened earlier than expected. Arie started dialysis last month, just before his baby was born.
Ilana has had two unsuccessful transplants and also needs a kidney. She began dialysis in her thirties too, which meant Arie grew up familiar with hospitals, and transplants, and what it meant to spend hours a day hooked up to the machine.
'Is it genetic?'
He learned of his PKD at age 21 as a student at the University of Western Ontario. He met Joy a year later at a party in Toronto, introduced by a mutual friend.
"We got chatting and realized the party was no fun, and went to a coffee shop and chatted all night," said Joy, a behavioural therapist with the Halton Catholic District School Board.
After a few days of spending time together, Joy's mother wondered why she hadn't been in touch, and she confessed that she'd been seeing a new guy. When she told her mother of Arie's mother's kidney disease, her mom asked the potentially pivotal question — "Is it genetic?"
The kidney disease was never a deciding factor in their romance, Joy said. It wasn't when they got married two years later either.
Arie ate healthy and took care of himself, hoping to put off the kidney failure he knew was inevitable. He was hoping to get a transplant from a live donor — his brother, he thought — before it got to the point where he needed dialysis. They planned to do the transplant in December, leaving him enough recovery time to be active when his baby was born. But doctors ruled out his brother with some last-minute tests.
More complicated game plan
Other relatives have been tested. A few people have heard of their story and stepped forward, but none of them have been a suitable match. They're hoping to find two willing live donors — one for Arie and one for his mother. Arie's blood type is O positive. His mother's blood type is A.
In the meantime, the couple is adjusting. Arie spends four hours every other day in a dialysis room at a local treatment centre. He hopes to try to continue his security business using his laptop and his phone.
"It's a more complicated game plan that most people experience going through a pregnancy, but we had lots of time to prepare for it," Joy said. "It was a big deal but it was not a big deal."
The pair have high hopes for their new son, who they hope travels the world with the same curiosity as his parents. Despite the busyness, they are elated.
The current goal: "I would like for the baby to know a healthy father," Joy said.