Maple Ridge rallies for Polegato family

Rare genetic condition taking teen son’s ability to walk

Annika Polegato

Annika Polegato

She’s always there to help others, whether it be in her former capacity with the hospital foundation, the kidney foundation, or for the past decade plus at the helm of Alouette Addictions.

Now, friends have spearheaded a campaign to support Annika Polegato and her husband Scott. But more importantly to help their son, Trystan, as he battles against a rare disease that has attacked the teenager.

When he was 16, Trystan was diagnosed with a rare disease called spastic paraplegia 5A, explained Annika. It causes muscle stiffness and severe weakness in the legs. He would eventually lose the ability to walk, doctors said.

Now, just two years later, at the age of 18, he already relies on a walker.

In July 2016, Trystan was at Childrens Hospital for an annual check up. He had been living with Legg Perthes disease since he was six. It is a childhood condition which weakens the hip bone, but he was still able to indulge his love of basketball.

During the visit, his pediatric orthopaedic surgeon noticed serious issues with Trystan’s balance, walking and gait. By the end of that day in July, he had been seen by multiple specialists and had a whole new care team – all trying to understand the cause of these concerning new symptoms. It took almost a full year, multiple tests including MRI, CT Scans, blood tests, spinal tap and DNA testing sent to multiple labs around the world to make a diagnosis.

As his legs continue to weaken, Trystan will increasingly rely on specialized equipment to allow him to move around his home and to function in the outside world. The family home needs renovations.

The condition is so rare the family does not have a timeline about what to expect, but did not expect the symptoms to worsen so fast.

“There is no ‘normal,’ but we didn’t expect it to go this quickly,” said Annika.

Costs are mounting.

The family now needs to install a customized lift that accommodates his walker and/or wheelchair so he can enter and exit the family home, an electric gate so he can leave the yard, a hospital bed – with a size upgrade so it will comfortably fit his six-foot-two frame, and multiple renovations to the home for his safety. In addition, Trystan will need a hand-controlled customized car before he can drive and regain the freedom of a young man. Few of these costs are covered by medical – to date the quotes are well over $40,000.

“There’s lots coming,” said Annika. “The costs are astronomical.”

“The porch lift is a huge opportunity for him to get his freedom,” she said. “As a family, we’re just trying to make sure he has his freedom, and can go out for wing night like everyone else.”

“Lots of people live very full lives in wheelchairs.”

She said her son has maintained his upper body strength, and exercises regularly to keep strong.

“It is not life shortening, but it is life altering.”

Members of the community are rallying around the family with online donations. Annika is well known from her work within the community and particularly as the executive director of Alouette Addictions. In 2017, she was a big winner at Maple Ridge’s Women Influencers Awards, taking of the Beyond the Call of Duty award. Her volunteerism includes Friends in Need Food Bank, Founder’s Cup, Help Portrait, Community Services and many more.

She has been on a leave from work, and will continue until at least the new year, as she regularly takes her son for doctor’s appointments, tests and treatments.

Longtime friend Dawn Daughton feels it is time for the community to support the Polegatos.

“The sheer amount of work and love and time and money they have put into this community… I can’t imagine anyone else’s family giving more than they have.”

“They are really getting slammed with the initial need.”

“There was a big reluctance for their family to ask for help,” said Daughton. “But if it was someone else this family would have been championing their cause, and bringing them dinners.”

Annika has touched a lot of people through her work in the city.

“I’ve had the pleasure of meeting Annika on numerous occasions and her bright, cheerful personality and passion for helping others always lights up the room. She’s done so much for our community and it’s time for us to shine the light back on her and her family,” wrote Cheryl Zanbergen on her Facebook Page for the group Moms Gone Wild.

The online fund received more than 10 per cent of its $40,000 goal in the first two days, and is approaching $7,000 since being started on Oct. 27.

See gofundme.com and search Trystan’s Equipment Fund.

Asked if she had any final thoughts, Annika said: “On behalf of our family, thank everybody, and encourage them to hug those close to them.”


 

@NeilCorbett18
ncorbett@mapleridgenews.com

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