The parents of a nine-month-old boy diagnosed with a rare condition that affects his heart muscles are urging families to talk about organ donations – not just for adults, but for children.

Residents of Gananoque, a town west of Kingston, Anne-Marie MacKenzie and Milton Tanswell have been living at Ronald McDonald House, along with their three-year-old daughter, waiting for word from SickKids that a new heart is available for their son.

Lucas Tanswell’s heart cannot pump blood to the body effectively. He requires an organ donor.

The young boy appeared to be healthy until around 4 a.m. June 20, when his mother said he wouldn’t nurse or come near her.

“He was completely inconsolable,” Anne-Marie MacKenzie said.

His father said that his son’s colour wasn’t right and his breathing was very low. The couple, thinking that their son was just sick or under the weather, went to their family doctor around lunchtime.

The doctor recommended they go to an urgent care clinic, where he was then airlifted to Kingston General Hospital.

“As soon as I saw the doctor, the way he was touching him and the concern in his face … you could tell this was not just (that) he has a cold or something,” Milton Tanswell said. “To me, it felt like we were there for a total of five minutes before we were running down the hallway with him on a stretcher. Things just went wild from there.”

Lucas, accompanied by his mother, was then airlifted to SickKids Hospital. Milton Tanswell had to make the three-hour drive from Kingston to Toronto on his own.

Lucas stabilized in July and the family was able to bring him to Collingwood for a vacation, but his health declined again a few months later.

On Oct. 10, Lucas had open heart surgery and received a Berlin heart, a ventricle assist device that pumps air into his heart.

“They say the machine is, in theory, good for a year, but if you talk to the doctors, they can stretch that,” Milton said. “I think the hope is that we don’t have to wait a year, but you never really know. There is no accurate timeline.”

Pediatric cardiologist Anne Dipchand said the pump is only temporary and that a new heart is the only option for Lucas.

“The longest documented patient in North America is just over two years supported with one of these pumps,” Dipchand said.

Lucas’ mother said that she knows other families have waited well over a year for a heart donor, but she remains hopeful that the phone call will come.

“We could get a call tomorrow. You never know.”

Milton Tanswell said that the whole experience has been eye-opening, especially when it comes to the process for organ donations for children. He said that most of the time, parents are tasked with making a decision to donate the organs of their children in moments of tragedy.

“It’s an unsettling topic. Nobody wants to talk about organ donation period, let alone little kids,” he said. “In order to get a viable donation, somebody has to talk to the parents who are in the process of losing their kid. This is not the time to talk about organ donation.”

“As parents now in this situation, we’ve had to think about it, but a healthy family with a healthy child doesn’t have to think about it,” Anne-Marie added. “The fact that they are struck with this decision in the worst possible time, the sacrifice that that parent has to give, if you are going to let your child be a donor.”

Lucas is one of 43 kids in Ontario under the age of 17 waiting for an organ to become available.

The family said that it is important parents discuss their wishes for children just in case such a tragedy were to occur. Anne-Marie MacKenzie said that she and her husband have already discussed the possibility of Lucas being an organ donor.

“It's a devastating thought. We've had the conversation with our doctors here about Lucas, because we wanted to talk about it before it was actually time to talk about it, if we unfortunately ever have to,” she said. “We want to make sure that nothing happens where he can’t be an organ donor. We’ve seen children waiting at the Ronald McDonald House for livers, kidneys, and we know these kids. I think it’s important.”

With files from CTV News Toronto's Michelle Dube