Cody's Story

Cody is 25 years old and lives in Beaumont, AB, Canada with his family (mom Bev, dad Tim, and younger brother Riley along with his 2 feline friends, Chloe and Zoe). Cody was born at 39 weeks, seemingly healthy. He had some minor feeding issues while nursing but we quickly figured things out. Looking back, there were signs that something was going on…low tone, taking 1 ½ hours to nurse, not meeting developmental milestones. When Cody was around 1 year, we noticed a tremor in his tongue (diagnosed with ataxia). Shortly after that, he had a febrile seizure, was sick with pneumonia and ended up in the hospital. It was here that doctors talked to us about underlying diagnoses possibilities and referred us to a team to help Cody get testing and the help he needed. He began therapies to help him with his speech, fine and gross motor skills. He received supports for 3 years prior to kindergarten to help him get ready for school.

Cody has had many tests done, including spinal taps, genetic testing, but back then there were only a few things that they tested him for. Everything always came back normal, despite Cody having fine and gross motor delays, ongoing ataxia, seizures and speech delays. When he was a bit older, he had more genetic testing but it was submitted for a study so were told that it could take up to 4 years to get the results back. I asked every year at his neurology appointments and was told the same thing each visit, “the results aren’t back yet”. Eventually I was told that they couldn’t find the results due to changes in their computer systems so had to get the testing done again. Luckily, when they reran the genetic tests, it came back in a month with the diagnosis of Harel-Yoon Syndrome (HYS) in ~ 2017. Soon after that, Cody started to have episodes of extreme nausea, vomiting and stomach pain and was diagnosed with abdominal migraines with cyclic vomiting syndrome. Due to the severity of his symptoms, he was hospitalized for 4 months and ended up getting an IVAD and a jujenostomy feeding tube. The tube has been a blessing as he has not had to be in hospital since he got it. When Cody was about 20 years old, we took him to the US to see a cyclic vomiting specialist (Dr. Boles) and he ran genetic testing on Cody, my husband and myself. Turns out the HYS comes from my husbands side (he has many siblings and nieces/nephews) but no one else has it. This test also found that Cody has another DNA variation (DNM1L), which Dr. Boles feels is the cause of his cyclic vomiting syndrome.

Currently, Cody still lives at home but has caregivers with him for most of the day. He is a sweet young man who is very social, loves a good joke, music and has the best smile. He remembers the movie that a song was in when he hears it on the radio as well as one liners from movies. His love is sports! This has been his passion since we took him to his first football game when he was about 10 years old. He loves most sports, but especially hockey, football (CFL and NFL), baseball and basketball. His favorite teams are of course, the Edmonton Oilers, the Edmonton Elks (CFL), the Edmonton Stingers (basketball) as well as the Pittsburgh Steelers. He also loves to play powerchair soccer. His wish trip through Alberta Dreams was a sports themed trip to Florida. We stayed at Give Kids the World resort and got see the Tampa Bay Buccaneers play the New Orleans Saints, Orlando Magic play the Cleavland Cavaliers, and the Tampa Bay Lightning play the Toronto Maple Leafs, as well as go to 5 themed parks. It was a once in a lifetime trip!

Currently, Cody is on different nutritional supplements to keep his mitochondria functioning at their peak. The cyclic vomiting is what really impacts his day to day life some days. Like other families with kids with this condition, we also remain hopeful that treatment and research will continue so Cody can live a long and fulfilling life.