After seeing their son’s wish come true an Okotoks family is set on ensuring many others get the same kind of opportunities.
Ian and Sammantha Elsom saw first hand what Make-A-Wish did for their son Euan earlier this year and are now raising funds for other children with other life limiting diseases, illnesses and syndromes with Ian set to rappel down the Barclay Tower in Calgary next month as part of the Rope for Hope event.
“You don’t realize these things until it impacts you and it’s (our) way of giving back,” Sammantha said. “Obviously they’re not having as many fundraising events and there’s a lot of other kids who are waiting for their wishes.
“It’s just a way to give back and help another child.”
Euan has dealt with a variety of health issues in his life and it was a seven-year road to receiving his diagnosis of Myhre Syndrome — a connective tissue disorder which is often characterized by short stature, mild to moderate intellectual disability and heart and aorta problems.
“He was born and had to spend quite a bit of time in the NICU, he had a few small things going on that we weren’t ready for,” Sammantha said. “He had an issue with his lungs when he was born, they found out he had two defects in his heart, had breathing complications.
“As he developed, he didn’t have any speech and he was quite delayed, he hit his milestones late.”
Right before the outset of the pandemic in February, Euan was able to have his wish fulfilled by visiting Sea World in San Diego with his parents and two older sisters Lauren and Niamh.
“They treated us and the little one fantastically well when we went to California,” Ian said. “To be honest, I wasn’t a great fan of Sea World prior to going to Sea World, you look at the reputation, the rumours, but the way he was treated, he got to do everything, high-five the dolphins, he got to meet the manatees and then the killer whales, which are his big thing – orcas.”
The trip was made possible by a generous donation from the Okotoks-based business Korth Group. Make-A-Wish came into the picture at the suggestion of their pediatrician Dr. Kelleigh Klym.
“Dr. Klym said that this is the rest of his life, it’s not going away, it’s not something that can be cured, it’s a matter of if something happens how they manage that,” Sammantha said. “She recommended Euan for Make-A-Wish, it wasn’t on our radar obviously. We completed all the paperwork and he was successful.”
Sammantha said the seven-year wait for a diagnosis could have been a lot worse.
“There are other kids who were diagnosed at 17, 18 and there’s actually some kids with Myrhe Syndrome that have been diagnosed after they passed away,” she said. “The syndrome itself was discovered in 1981 so there’s not a lot of background to it.”
The rare genetic disorder, first reported in 1981, has just 200 diagnosed cases in the world, only five in Canada with Euan being the only one in Alberta known to have the syndrome.
“It was overwhelming, very overwhelming, and it still is,” Sammantha said of the diagnosis. “It’s helped us because we’re part of a few groups now and some families have kids who are older and have different complexities than what Euan does and it means now that we can watch out for things.”
The Make-A-Wish Rope For Hope, held Sept. 17 is a fundraising challenge at different communities with participants rappelling down the edge of high profile buildings. Each participant is required to raise a minimum of $1,500 to take part.
The Barclay Tower in Calgary is 15 storeys high.
“I’ve done it before a long time ago from a considerably lower distance and a slightly different environment so I’m somewhat nervous,” Ian said. “When Sammantha suggested I do it I thought ‘you know what, a little bit of nervousness, apprehension on my part is nothing compared to what the kids go through and what the families go through.’”
To make a donation to the Elsom’s fundraising page click here.
