Two years old and never been home

Taylum Lamoureux has spent most of his 19 months of life at Toronto's Ronald McDonald House and the Hospital for Sick Children next door.

After he was born in Sudbury, on April 10, 2013, he needed to be airlifted to Toronto because his kidneys were on the verge of failing.

Taylum was born with polycystic kidney disease, which causes large cysts to grow on both is kidneys.

“They were crushing his lungs, crushing his stomach and causing dangerously high blood pressure,” said his mother, Désirée Lamoureux.

Doctors removed one of his kidneys after five weeks, and the second after 10 weeks.

Since then he has needed to go on hemodialysis — a treatment not offered in Sudbury for infants — six days a week.

His mother has been at his side nearly every moment of his young life, leaving family, friends and her husband Darren, behind in Sudbury.

Nearly two years after his birth, Lamoureux is still waiting to bring her baby home.

“I've not experienced that yet. I feel like life is on pause,” Lamoureux told NorthernLife.ca over the phone.

Since he was born, Taylum has only returned to Sudbury twice, for short visits.
When he turns two, Lamoureux's job as a high school teacher could be in jeopardy as Ontario's caregiver law only guarantees a person's job will be held for two years.

But for now, her young son's life is her only concern.

The family hopes Taylum's father, Darren, will be able to donate one of his kidneys.

Kidney transplants are only possible from adult donors, and right now the family is waiting for Taylum to be big enough to accept a kidney donation.

That day could be in the very near future.

Taylum needs to be at least 10 kg, or roughly 22 lbs., and around 80 cm in height, for his body to accept an adult kidney.

He currently weighs 9.9 kg and is 78.2 cm tall.

With a new kidney, he would be able come home and would only need to return to Toronto every couple of weeks.

But even a kidney transplant will still come with many challenges for the young boy, who has already defied early odds that gave him one week to live.

There are no guarantees his body would accept a kidney, and the anti-rejection drugs he would have to take come with their own set of side effects, including an increased risk of cancer.

At best, a kidney transplant can last 25 years, which means Taylum would need another transplant down the line.

But for his mother, a new kidney would allow them to allow the family to move forward.

Even with the support of friends and family, and help from organizations like Ronald McDonald House — which offers them a place to stay near the hospital for $15 a day — the experience has been hard for Lamoureux and her family.

“I want to enjoy my son and some kind of normalcy,” she said. “The motherhood that I envisioned.”

Lamoureux said it was especially difficult when she and Taylum first arrived in Toronto.

“When I was outside, I felt kind of strange,” she said. “I would look at everybody and think, 'How could you just be walking down the street?' Everyone looked so normal and unaffected when I felt like my whole life was falling apart.”

One month ago, one of Lamoureux's friends launched an online fundraising page to help cover Taylum's expensive medical costs. The page has raised $10,321 so far.

Lamoureux said she and her family are also strong advocates for organ donations, and encourage people to visit beadonor.ca if they, or even their children, are not yet registered as organ donors.