However, according to his father Rick, Ethan is doing well and enjoys life to the fullest.
“For what Ethan has been through, he’s a real trooper. He’s a fun loving, comical little boy,” Rick said during a recent phone interview from Ronald McDonald House where Rick and Ethan are now staying.
Ethan had reconstructive knee surgery at the Janeway Children’s Hospital about two months ago. It’s the third time he’s had surgery on his knee and he requires physiotherapy for the next three weeks.
Born with Down syndrome, Ethan has a heart condition called Trilogy of Fallot.
He has had four heart surgeries.
His first operation was performed when he was six weeks old. His most recent heart surgery – to repair a leaky valve - took place in February at Toronto’s Sick Kids Hospital.
Ethan is involved in the Burin North Special Olympics as well as the 121 Mary Rose Sea Cadets in Marystown.
He plays cymbals in his Sea Cadets’ band, Rick said.
“He’s outstanding at that,” Rick said proudly.
When Ethan first joined cadets, however, people wondered how he would do, his father said.
“As the years went on, they tried him with the cymbals. And you’d be surprised how smart (children with Down syndrome) are. Sometimes, you take for granted that they can’t do a big lot. But, give him something to do, and he’ll surprise you,” Rick said.
Ethan is also good at track, the standing long jump and the shot put.
A Grade 11 student at Marystown Centre High, Ethan also loves hockey and, according to his father is “the number one Sidney Crosby fan out there.”
“Ethan has issues but they don’t seem to bother him. And I wouldn’t trade him for the world,” Rick said.
Ethan has a nine-year-old brother. Liam helps Ethan a lot, Rick said.
Rick said he and Lori are grateful to family and friends for their support when preparing for Ethan’s most recent heart surgery at Sick Kids.
A benefit concert at 5 Dock Row in December 2016 was followed up by another fundraiser in Rushoon, he said.
The financial assistance – from community fundraisers and from individual donations - has helped a great deal, he said.
“When Ethan was getting ready to go to Toronto, people were just coming up and asking what they could do,” Rick said.
Ethan’s father said his son’s team of health professionals at the Janeway are great. Ethan fundraises for the hospital (through the Janeway Foundation) every year, he said, and over the past 12 years, he said, he’s raised close to $40,000.
“That’s our way of giving back,” Rick said.
The family is also grateful to staff and volunteers at Ronald McDonald House – in this and other provinces.
Ronald McDonald House is a place where you meet many people. Some become lifelong friends, Rick said.
“We’ve stayed at the Ronald McDonald House twice when Ethan was in Halifax for heart surgery,” he noted. “And we stayed in the one in Toronto. We’re here now (in St. John’s Ronald McDonald House) for the next three weeks. I just can’t say enough about this place. I don’t know where we’d be without it,” he said.
Always a smile
Ethan’s mother Lori describes her oldest son as a pleasant boy who always has a smile on his face.
“Everyone he meets loves him. His positive attitude and loving personality gets him through all of it,” she said when contacted via social media.
Lori has similar ambitions for her son as most parents.
“My hopes and dreams are for Ethan to be healthy and to do the best he can in all he does,” she said.