A local family is hoping to travel to Salt Lake City this summer to learn more about their daughter's rare syndrome. Ryan and Steph Suderman's daughter Hayden has 1p36, one of only two known diagnosis in the province.

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. While there are people with 1p36 in the U.S and Europe, very few are living in Canada. The diagnosis itself has only been around for less than 30 years.

To learn more about life with the rare condition, the Sudermans hope to attend an annual 1p36 conference, noting last year's event in Houston was life-changing. The three day conference features speakers, doctors and more than 50 families with kids living with 1p36 ranging in age from ten months to 30 years old.

"It was the greatest thing we could've ever done for us and our daughter. Connecting with the families there was the best thing," Ryan says.

Steph adds the sense of connection and belonging was powerful, "it was the first time Ryan and I felt like we "fit'".

Submitted photos.

"You can only imagine what it was like for us to sit down and talk to these parents and 1p kids who have experienced so much of what we have yet to experience, ask them questions about the past, present and future," Steph says.

Ryan notes they've given their doctor permission to share their contact info with any other family with a child diagnosed with 1p36 in hopes of meeting them and the opportunity to support and encourage each other on the journey with the rare genetic disease.

The family has also planned a bake sale fundraiser April 13 at the Winkler Co-op to help cover the costs associated with the conference.

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