When a Charlottetown cardiologist told Michelle Moore in May 2014 she’d better sit down to hear her son Aden’s diagnosis, she didn’t know what to think.
After all, her son was referred to the cardiologist because of a heart murmur.
The doctor’s words would change her family’s life forever – hypertrophic cardiomyopathy – a genetic disorder that causes the heart muscle to thicken beyond normal and can cause a heart attack.
“It was a complete shock,” she said. “You don’t know what it means. You’ve never heard it before.”
Doctors also noticed Aden was having trouble with his balance.
The Summerside family was referred to the IWK Health Centre so Aden could see a neurologist.
In July, Aden received a new diagnosis – Friedreich's ataxia, a rare degenerative neuromuscular disease.
“You kind of forgot about the heart condition because then you had a degenerative neuromuscular disease,” said Michelle.
“There’s no medication Aden can take for his neuromuscular disease. There’s no cure.”
A social worker at the IWK told the family they qualified for a wish with the Children’s Wish Foundation of Canada P.E.I. Branch.
The family – Aden, Michelle, Aden’s father Rodney and sister Maddison – recently came home from that wish – a seven-day, all-expenses-paid trip to Los Angeles that began Dec. 2.
“I took a long time to think of what to do because it’s a big decision,” Aden said.
Aden, 15, is an Ottawa Senators fan. In California, he got to see the Senators play the Anaheim Ducks on Dec. 6, and the Los Angeles Kings the following night. Ottawa lost both games, but the Los Angeles game went into overtime.
The family watched the Anaheim game from a luxury box. The team’s mascot met Aden with a bag of merchandise, including an autographed picture of Corey Perry and a signed puck. And, during the intermission, Aden got to ride around the rink in a Zamboni as it cleaned the ice.
People in the stands waved at Aden as he passed by.
“I waved back,” he said.
But watching hockey was only one activity the family was involved with during a busy week. They also visited the Santa Monica Pier, Universal Studios, Disney Land, Warner Bros. Studio, the Hollywood Walk of Fame and Grauman's Chinese Theatre to name a few.
Aden also met a couple of celebrities – Betty White and Snoop Dogg. Well, not quite, but he did see their wax replicas at Madame Tussauds wax museum.
“Not bad,” said Aden.
Michelle explained the trip to Los Angeles was an early Christmas present for Aden, and the family is thankful to Children’s Wish for making it happen.
“We were in Hollywood for seven days and did a ton of things. And, nothing (was) out of our pockets. We were able to go. The flights were arranged for us. The hotel was arranged for us. We just had to show up, which was pretty amazing. We were able to spend a week together as a family, just enjoying it day by day and building memories, which is pretty cool.”
Aden is back studying at Three Oaks Senior High School and Michelle is back teaching at Summerside Intermediate School.
Since the diagnosis, the family has had a lot to learn about making sure Aden gets the best medical care and that his teachers understand his needs at school. Aden also has a good group of friends at school, Michelle explains.
The family has learned to live day by day, and each day to its fullest – “because you don’t know what the next day will bring,” she said.
They’re also proud of Aden and how tough he is as he goes through this journey.
“We’re thankful for family. We’re thankful for friends. Despite what he’s going through, he’s a trooper,” she said.
And, as Christmas approaches, Michelle is reminded how important the trip to Los Angeles was for Aden and the family.
“Christmas is all about being with family. And, wishes come true, and hopes and new life and new beginnings and a new year,” she said.
“You just don’t know what’s going to come. We were together. We were with our family. It’s a wish – a children’s wish. Whenever kids are tiny, they’re all full of wishes. But teenagers don’t really say too much about what they’d like for Christmas. So, it’s a good Christmas present for sure.”
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The Guardian’s I Believe series, which will be published both in print and online between now and Christmas, will include inspirational and uplifting stories to get us in the holiday spirit. If you have a story that you believe should be part of the I Believe series, please email [email protected].
Other stories in the I Believe series:
I BELIEVE: Children of inmates at P.E.I. jail get presents for Christmas
I BELIEVE: No shortage of support for international community on the Island over the holidays
I BELIEVE: Musical Christmas lights display up and running in Indian River
I BELIEVE: Christmas together on P.E.I.
I BELIEVE: Boy on P.E.I. bringing joy to children, buying gifts for Islanders in need
