Kelowna family heading to Variety Show of Hearts Telethon

The Priede family Alyson, David and Olivia have received lots of help from Variety as mother and daughter suffer from neuromuscular disease

  • Feb. 13, 2015 5:00 p.m.
Mom Alyson and daughter Olivia both suffer from Central Core Myopathy and will be featured on the Variety Show of Hearts Telethon this weekend.

Mom Alyson and daughter Olivia both suffer from Central Core Myopathy and will be featured on the Variety Show of Hearts Telethon this weekend.

Four-year-old Olivia Priede is a fighter.

Diagnosed with Central Core Myopathy at three months of age, doctors initially informed Olivia’s family that she may never walk. But together with her family, along with some help from groups such as Variety – The Childrens’ Charity, the young Kelowna girl has already begun to show signs that she will prove doctors wrong.

Last year Olivia started taking private swim lessons and within the waters of the kid’s pool at Parkinson Rec. showed that fighting spirit as she took her first steps in the buoyant confines of the pool.

“When doctors told us she will need a wheelchair and to prepare that she may never walk, I was completely devastated. I refused to believe it,” said mother Alyson Priede, who recalled the feeling seeing her daughter take those steps in the swimming pool. “I was sobbing. I had waited so long to see her do that. It was remarkable, It is what keeps me going.”

Central Core Myopathy is a neuromuscular disease that affects the development of muscles to varying degrees. Mom Alyson also suffers with the disorder, although she wasn’t properly diagnosed with it until she was 24-years-old, and the effects of the disease aren’t as strong in Alyson.

“Olivia is more affected by the disease than I am because I was carrying the gene,” said Alyson, who said her daughter has shown an amazing spirit in her four short years. “She has a great attitude about her disability, She is aware she is different but she has a spirit in her that is determined to be able to do anything in her own way. She is a fighter.”

While she continues to work towards eventually proving doctors wrong, Olivia can walk using her leg braces, in a walker or holding hands with someone although she doesn’t have proper balance to do it on her own. At home or in daycare, she mostly gets around crawling, accomplishing simple tasks that many families take for granted. In everything she does, that fighting spirit shines through.

“When she accomplishes something she has worked so hard to do, the look on her face is priceless,” said Alyson. “Then I sob and she asks me why I’m crying and she tells me it’s OK. I am so proud of her. We have been handed a lot in four years but you just have to keep your chin up and stay positive.There may be a few bumps and challenges along the way but we always get though it. I know she will walk one day. I just don’t know when.”

As a child, Alyson did not walk until she was three-years-old and now as an adult still suffers from the effects of Central Core Myopathy. She cannot run or jump, stairs are difficult and she cannot lift Olivia from the ground up. So as she watches her young daughter deal with many of the same things she has in her life, it creates a strong bond.

“We have a bond like no other mother/daughter,” she said. “I know exactly what she is going through and the frustrations that are going to come up in her life. I will be there by her side to talk her through it and let her know it will be OK.”

While the Priede’s continue to work through the issues surrounding Olivia’s disability, this weekend they will take part in the annual Variety Show of Hearts Telethon, helping to raise money, not only for Olivia but also for many other children and families who need help from the public.

It’s a way of giving back to the charity that has been with the Priede’s since Alyson was diagnosed, helping the family afford a van and the conversion needed to make it wheelchair friendly among other things.

Alyson, her husband David and Olivia are all heading to Vancouver to the Show of Hearts Telethon. Alyson will volunteer on the phone lines and Olivia will present fundraising totals with other kid champions throughout B.C.

“It’s funny because I grew up watching the telethon with my mom and sister and now we are a part of it and Olivia will have a segment,” said Alyson. “Variety has been very generous to our family, they are very understanding and familiar with our circumstances.”

The Variety Show of Hearts Telethon is Saturday and Sunday on Global BC. The telethon will feature a family spotlight on the Priede’s Sunday at 1 p.m. If you wish to donate Olivia’s Variety fundraiser you can call Alyson directly on Sunday between 11 a.m. and noon at 604-549-7001. You can also donate online at variety.bc.ca.

Kelowna Capital News