Zach Tremblay (front left) receives a check from last year’s fundraiser with his brother Mason Tremblay and (back row from left) sister Kailie Spender

Local youth still awaits kidney transplant

Zach suffers from renal hypoplasia dysplasia, a condition where the kidneys are undersized and misshaped.

BETSY KLINE

 

Castlegar News

 

Seven months have passed since a community fundraiser highlighted the needs of a local family whose son needs a kidney transplant. The event was hugely successful and the community showed tremendous support for the family.

However, 12-year-old Zach Tremblay still needs a kidney and the family’s medical expenses continue to climb. Zach suffers from renal hypoplasia dysplasia, a condition where the kidneys are undersized and misshaped.

Since the fundraiser, Zach’s condition has deteriorated and he is now on peritoneal dialysis. This form of dialysis is done at home in a 10-hour cycle every night through an abdominal catheter. The dialysis set up has not been without complications; Zach’s catheter has already had to be replaced once, he has had issues with anesthesia and has battled infections.

To complicate matters, pediatric dialysis is not supported locally. Zach’s mom Jana Spender described the situation: “There was one week we were down there [Vancouver] three times. We do not have the resources here. So when things go wrong, it’s very hard. There have been numerous, numerous trips. I could not even begin to count them to be honest.”

The family has also experienced a heartbreaking setback when a potential donor passed all of the initial screenings, but in the final round was determined not to be a good enough match to justify the risks.

The decision to let Zach know there was a potential donor was a hard one. But his mom feels it was the right one.

“I don’t think I would change it. I don’t think I would rob him of the excitement of the possibility. Everyone took it really well except for me. I, for the first time, put all of my eggs in that one basket, with too much hope.

“He took it really, really well. I don’t think he would have wanted to not know. He was disappointed, he got a little teary and then he just said ‘Well, it wasn’t the one for me then.’”

Right now Zach is eligible for a donation from a live donor. To start with, a donor must be in good health, 19 or older and share Zach’s O negative blood type. A donor can remain anonymous throughout the entire process, or reveal their identity if they so choose.

There are currently 563 people in BC waiting for an organ donation. More information on how to become an organ donor or see if you might be a match for Zach can be found at transplant.bc.ca or by calling 1-800-663-6189.

To become eligible for a deceased donor, Zach’s condition must deteriorate further — a frustrating spot to be in.

“But the more deteriorated your body is, the harder it is to bounce back from the surgery as well,” Spender said.

“There is sort of this fine window of time. Sure, he feels good and everything is going good, but then he declines and his body starts working against us and we have that to deal with on top of the disease.

“To me, that is the political part of things. He is not eligible to receive a deceased kidney, but yet at the end of the day, the only thing that is keeping him here now is the dialysis.

“Really, if your life literally depends on this machine, I just don’t understand just how much more ill our government thinks one has to be. But that is the criteria.”

Spender estimates they have already had more than $12,000 in expenses. When the day comes for the transplant, Zach and a parent will need to spend three months in Vancouver, resulting in huge travel and living expenses as well as lost wages. Donations can still be made through the fundraising website fundrazr.com at “Help Zach get a new kidney” and through the Castlegar CIBC branch.

 

Zach reports he has more energy and doesn’t feel as tired as he did before dialysis. With the aid of some clever protection for his catheter site, he is even playing soccer. He refuses to let his disease define him and has kept the spunk and smile those who know him are used to.