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Fort Macleod family on unexpected journey with son who has rare disorder

Ben and Bella Duce with their children Rhett and Wyatt.

A Fort Macleod family began an unexpected journey nearly three years ago with the birth of their first child.

Bella and Ben Duce had to suddenly learn about a disorder they had never heard of before the birth of their son Rhett.

Rhett was born with Angelman Syndrome, a rare genetic and neurological disorder.

“Becoming a parent to a child with this specific syndrome has not been an easy one but it has been so rewarding,” Bella Duce said. “Because Angelman is so rare most doctors, nurses, therapist or child care workers have not even heard of it. When we tell people Rhett’s diagnosis they have no idea what we’re talking about.”

“We are all learning as we go which can be difficult because we look to professionals for help but they don’t really know the answers either.”

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.

Bella Duce said her son is loving, affectionate and happy and almost always has a smile on his face.

“He is so excited to see anyone and everyone,” Duce said. “ Whenever anyone walks past us or approaches us he can hardly contain his body or grin because he just loves people.”

Rhett loves animals, water activities, food and having books read to him. His favourite places in Fort Macleod are the outdoor pool and the spray park.

Rhett’s life is not without  struggles. He is non-verbal, doesn’t yet crawl or walk and experiences seizures and epilepsy.

He was once flown to the children’s hospital in Calgary by STARS air ambulance.

Rhett Duce was born nearly three years ago with the rare genetic disorder Angelman Syndrome, which causes delayed development and other challenges.

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.

“Rhett faces all of his obstacles with so much determination bravery and extraordinary strength,” his mother said. 

As the Duces have learned all they can about the disorder, they have experienced other lessons as parents of a child with Angelman Syndrome

“Rhett has taught us to never take the little things for granted,” Bella said. “We celebrate the small achievements in our home like Rhett learning to grab snacks off of his tray, learning to sit up at two years old and even using both hands to hold a toy. These moments feel so huge for us.”

“Our eyes have been opened to a whole other world that you sometimes don’t fully understand and can’t even comprehend until you are living within it. The appointments, milestones missed, watching your child in pain and confusion. Rhett helps us be strong during his hard times because he is so tough.” 

Like other parents of children with challenges, the Duces have had to become advocates for their vulnerable little son — a task they don’t take lightly.

“It’s been a journey of heartbreak as the life we once pictured for our son has completely changed but we are now determined to get the best help possible so we can lay a strong foundation for him to succeed in mobility, communication and his life in general.”

The Duces aren’t on their own on this journey, aided by supportive family members and the Fort Macleod community. 

“We have so much support from family, friends and community,” Bella said. “We constantly have love and support directed our way. It would be an impossible journey without them.”

The Rotary Club of Fort Macleod, for example, helped fund the purchase of a walker for Rhett last spring. The Duces have already noticed improvement in Rhett’s assisted walking.

The Duces have also connected with other parents of children with Angelman Syndrome and have joined a Facebook group that provides support and information.

Along the journey the Duces have gained friends from all over the world, including a family in Utah with a son the same age as Rhett who also has Angelman Syndrome.

Bella and Ben plan to extend their circle once the COVID-19 pandemic is under control and it is possible to travel and meet other people.

“They all help ease the load and make the journey a lot less lonely,” Bella said. “Connecting with families facing similar challenges uplifting as we share experiences and relate to one another. And most of our stories to a diagnosis sound very similar.”

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.

Anyone who would like to help fund that research can do so at https://cureangelman.org.

There is also opportunity to help out closer to home.

The Duces are saving to buy a $6,000 activity chair recommended by Rhett’s physiotherapist.

The activity chair will provide 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. 

“We believe it will benefit him greatly,” Bella Duce said. 

Although  they face daily challenges, his parents are proud of what Rhett has already accomplished in his short life.

“He is a teacher to medical professionals and urges further knowledge and research. He’s an inspiration to me and other families when he accomplishes things we thought were impossible,” Bella said.

“Rhett is also just so pure and sweet. He can make people smile so easily and brighten your day. Every time we go out on a walk people comment on his smile and how happy he is. He’s just such an amazing addition to our family and community.

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