Article content“If he was an adult, he’d be in bed moaning about how rough he feels, but he doesn’t know he’s feeling rough because it’s all he’s ever known,” said Jenny.Article content‘Find Ethan’s Match’Article contentAbout six months ago, Ethan went in for an appointment to assess his kidney health. The doctors found his function levels had dropped drastically in the two years since they had done the specialized test.Article contentIn 2024, he was at 77 per cent kidney function. Earlier this year, they determined it had dropped to 24 per cent. Six weeks later, he was at 17 per cent kidney function, putting him in end-stage renal failure.Article content“We were shocked when it went from 70 per cent down into the 20s. We weren’t expecting a rapid decline like that, so it definitely hit us hard,” said Paul. “We hadn’t really prepared for it because we thought he had a few more years.”Article contentThat kickstarted the search for a new kidney.Article content Ethan Hackney builds Lego while in a hospital bed. He is now at 17 per cent kidney function and doctors say it’s time for a kidney transplant. ContributedArticle content“Things are changing rapidly, and we have to adapt to that,” said Paul. “That brings a lot of emotion, for sure, a lot of stress, a lot of anxiety, a lot of thought, for sure. It’s always present on our minds and we’re carrying it heavy right now, as opposed to six months ago.”Article contentArticle contentEthan is high on the transplant list if a kidney from a deceased donor becomes available in Nova Scotia, since pediatric patients are a priority for kidney transplants. But a kidney from a living donor is preferable, Jenny said, because the kidney lasts longer and the transplant can be planned ahead of time.Article contentSo, they started a social media page called Find Ethan’s Match on Facebook and Instagram last week to share Ethan’s story and ask people to consider donating a kidney.Article content“These days, social media is an incredible space to start,” said Jenny. “It’s easy, it’s accessible. You can get things out quickly.”Article contentOn the page, they also share information on congenital nephrotic syndrome and kidney transplants.Article contentJenny said that while it feels strange to “search the country for organs,” the response has been incredible. She said she’s grateful for anyone who has reposted or shared their videos.Article contentA new kidney, a new startArticle contentPaul and Jenny are not involved with the donor candidates and aren’t informed of anyone being screened for Ethan’s requirements. They won’t be told of any possible matches until it is time for a transplant to happen.Article contentArticle content“They only tell us as the family when it’s time, when it’s ready, to protect everybody, to protect the donor, to protect us and our hearts,” said Jenny.Article contentThere are many considerations for donation candidates, including blood type, medical history and motive for donation, along with numerous other screening questions.Article contentJenny and Paul say they couldn’t have made it through the last six years without their friends, family and the staff at the IWK, who have made the Hackneys feel comfortable and supported.Article content“Everyone who is (at the IWK) has made our journey so much easier and just have been so helpful,” said Paul. “The care that we’ve gotten there is just incredible.”Article content The Hackney family, Callum, Jenny, Ethan and Paul, pose for a picture in their living room in their home in Herring Cove on Saturday. Photo by Emma Breton /The Chronicle HeraldArticle contentA kidney transplant will bring its own complications. Ethan will continue to be on medication for the rest of his life and will need another transplant since donated kidneys need to be replaced after 15-20 years.Article contentBut it will make a world of difference.Article content“Ethan is six and he goes through so much that no six-year-old should ever go through,” said Jenny.Article contentIt will mean less time spent in hospitals and more time spent with friends and family, doing art and playing with his best friends.Article contentEthan bashfully declined to comment but, in a social media video, said the first thing he would do with a new kidney is ride his scooter.Article content
Search for a kidney underway for six-year-old Nova Scotia child
