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Fort Macleod rallies to support boy with rare disorder

Rhett Duce, who has the rare genetic disorder Angelman Syndrome, which causes delayed development and other challenges, in his new activity chair. Fort Macleod residents donated $6,000 for the chair, and another $8,000 for a special bed.

Fort Macleod has rallied around a young boy challenged by a rare genetic and neurological disorder.

Friends, family and complete strangers responded to the family’s desire to buy a $6,000 activity chair for Rhett Duce, who was born with Angelman Syndrome.

The community not only donated $6,000 for the activity chair, it chipped in another $8,000 for a special bed.

“I’m so glad Rhett gets to grow up in a town where he is so loved and supported by everyone,” Rhett’s mom, Bella Duce, said. “We never imagined surpassing our original goal that quickly, let alone doubling it.”

Angelman Syndrome — named for the doctor who discovered it in 1965 — causes delayed development, problems with speech and balance, intellectual disability, and sometimes seizures.

According to the National Organization of Rare Disorders, Angelman Syndrome is caused by deficiency of the E3 ubiquitin protein ligase (UBE3A) gene expression.

Angelman Syndrome affects one in roughly 12,000 to 20,000 people.

At present there is no treatment or cure for Angelman Syndrome, but the research that is under way is encouraging. Scientists have repaired the gene multiple ways in mice, providing hope a cure will be found in Rhett’s lifetime.

Rhett, who is non-verbal, doesn’t yet crawl or walk and experiences seizures and epilepsy, is loving, affectionate and happy and almost always has a smile on his face.

Rhett, who celebrates his third birthday May 8, loves animals, water activities, food and having books read to him, and Bella said his favourite places in Fort Macleod are the outdoor pool and the spray park.

Rhett also has a sleep disorder, sleeping only two to six hours a night because he simply does not require as much rest as other people.

Like other children with Angelman Syndrome, Rhett undergoes regular physical, occupational and speech therapy.

The activity chair recommended by his physiotherapist provides Rhett a safe place to sit and eat and will help keep still a little fellow who is constantly moving and rocking so adults can focus on his therapy.

“I still can hardly wrap my head around how quickly people jumped to help us,” Bella said last week of the response once Rhett’s story went public in February. “The community of Fort Macleod has gone above and beyond to help our family whether they knew us or not.”

“Once people started hearing about Rhett’s story they did whatever they could to help. As his parents you can’t help but feel overcome with gratitude.”

Rhett moves around a lot in his sleep and sometimes bangs his head. He is also starting to sit and stand up against the sides of his current bed and tries to get out.

“This could potentially be dangerous so it was vital for us to get him a safety sleeper,” Bella said.

Bella explained the safety sleeper is made mostly of mesh that is opened and closed with a zipper and creates a safe environment for Rhett to sleep and play.

The bed is easy to pack for travel so the Duces have a safe space for Rhett when they travel. He is too big for a playpen and can’t sleep on a regular bed. 

“These pieces of equipment Rhett so desperately needed seemed so out of reach but within a month we were able to order both,” Bella said. “There are not really words to describe how grateful and thankful we will always be.”

Bella, her husband Ben and their son Wyatt expressed appreciation for the small businesses and individuals who were so eager to help. 

“I honestly thought donations would mostly come from people who knew us directly — and a lot of them did — but I was shocked at how many individuals donated that were complete strangers to us,” Bella added. “We received many generous anonymous donations.”

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