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An infant in Winkler is living with a rare disease, the second diagnosis of its kind in Manitoba.

At fives weeks old, Hayden Suderman was diagnosed with epilepsy and infantile spasms. More testing eventually revealed Hayden suffers from a rare genetic disease called, 1P36 Chromosome Deletion Syndrome.

Through online support groups parents Ryan and Steph Suderman have discovered similar cases in the U.S and Europe, though very few in Canada. The diagnosis itself has only been around for less than 30 years.

"We don't know the future effects because there aren't any stats," Ryan, says. "Her (Hayden's) generation is the future stats."

hayden familyThe Suderman family

Ryan explains Hayden was born without a crucial part of a single chromosome that affects development.

While comforted in finally having an answer, the growing family is still adjusting to the new reality.

Despite the challenges, Steph said their time at the Children's Hospital gave them a deep sense of gratitude, surrounded by many other families on difficult health journeys.

"She's here with us, we can take her home," Steph said.

hayden3Statistically, a majority of 1P36 people aren't able to speak, though many learn sign language

Statistically, a majority of 1P36 people aren't able to speak, though many learn sign language. Delayed development can also cause hearing loss and poor eyesight.

Many are very intelligent and a vivid memory is often a prominent characteristic of those living with 1P36.

However, it was a visit with one of the only other people living with 1P36 in the country that brought a renewed sense of hope.

The Sudermans recently met Silver, a young woman from B.C living with 1P36.

hayden silver1One year old Hayden with 15 year old Silver. Both live with the extremely rare 1P36 Chromosome Deletion Syndrome

"It was just a great experience," Ryan says.

"They're very uplifting, very positive people," Steph adds. "It's good insight into what our life could look like."

"She (Silver) was so joyful, it was exciting to see. Different kind of lifestyle for sure, something to get used to, but I think it will be good," Steph says.

She notes there's many similarities between 1P36 kids, "they say they're all like siblings... they understand each other."

However, they have seen great progress in Hayden this summer. Ryan notes Hayden hasn't experienced a seizure since June.

"That's when we noticed her development has picked up," Ryan says. "And they say seizure control is the number one factor in progressing with development."

hayden silver2Hayden and Silver, the only children with 1p36 Deletion Syndrome known to be born in Manitoba

 

The Sudermans say while they're still adjusting to their new reality, they move forward with a sense of purpose.

"When you're pregnant, you paint a picture in your mind of what your family's going to be like and what you're going to do," Steph says. "And a lot of those plans might not look the same. At the same time there's so many positives... I look at it like we were chosen for this, I don't feel hindered."

"We were given Hayden and her condition for a reason," Ryan says.

hayden1 "We were given Hayden and her condition for a reason," Ryan says

Both recount how, as teenagers, they independently felt they would one day have a child with special needs.

"The Lord planting a seed," Steph says. "It's definitely challenging, but I've never felt like it was a weight on my shoulders... it's just our normal."

The Sudermans continue to work with a number of doctors including speech and physiotherapy specialists. Ryan notes Manitoba is equipped with a number of great resources.

"We're not going to look at what she can't do, we're going to look at what she can do," Ryan says.

hayden2Photos courtesy Steph Suderman

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