A Fort MacLeod, Alta., family was met with a rare diagnosis shortly after their son Rhett’s first birthday and is now hoping to raise awareness around rare conditions.
Shortly after Rhett was born in May of 2018, his parents Bella and Ben Duce noticed some abnormalities in his actions.
Although they were first-time parents, Bella is the youngest of six siblings and says she had become familiar with infant behaviour while around her many nieces and nephews.
“Almost right off the bat, we could tell things were a little bit off about him, just from his movements, the sounds he would make and the way he cried,” she said. “Also, he barely ever slept.”
After months of tests and waiting, Rhett was diagnosed with Angelman’s Syndrome, a rare neuro-genetic disorder that occurs due to an abnormality in the 15th chromosome on the mother’s side.
According to the Angelman Syndrome Foundation, it affects approximately one in every 15,000 live births and 500,000 people globally.
Dr. Cole Leavitt, the Duce’s family practitioner, said he hasn’t seen a patient with Angelman’s Syndrome since he was in medical school.
He says when the family came to him with their concerns and suspicions, he referred them to specialists in Calgary to find a diagnosis.
“We don’t always have an in-depth knowledge of things that are more rare,” he said. “So the awareness for it is very useful for the medical community.”
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Some of Rhett’s symptoms include lack of motor function, inability to walk on his own, seizures, and lack of sleep.
“He doesn’t require the same amount of sleep that most typical kids would,” Bella explained. “Currently, he is sleeping anywhere between two and six hours a night.”
Ahead of International Angelman’s Syndrome Day on Feb. 15, non-profit organization Bo Smith & Co. has been creating embroidered pieces in honour of Rhett.
The organization typically creates pieces for children with cancer, but they were grateful to expand for this collaboration.
“Bella reached out to us a few weeks ago and asked if we ever wanted to do anything to raise awareness for Angelman’s Syndrome, and we just jumped on the idea,” said founder Sydnee Smith.
“We are embroidering angel wings on a crewneck, or any piece of apparel, and just selling those and then a hundred per cent of those proceeds will go to Ben and Bella’s family.”
The items are being sold on Bo Smith & Co.’s Instagram page, as well as their website.
Bella says they plan to put the money toward a new activity chair for Rhett.
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