When Emily Bylsma was born, her parents did not expect her heart complications to develop into a lifetime of special needs. Although the Grade 9 student has experienced challenges that affected the whole family, she is now making steady progress thanks to a large support network.
As the third child of six for Aimee Bylsma, Emily was born with a heart defect that affected four parts of her heart. The family was living on the lower mainland at the time and she was required to spend the first two weeks in hospital.
Along with having a stroke while in the womb, Emily was afflicted with genetic complications. She was weak and after suffering a respiratory illness at five months, had open heart surgery the following month.
The combination led to other problems throughout Emily’s body and has severely impacted her mobility.
It was a domino effect after she had an aneurysm at the back of her skull. During an MRI for something else, abnormalities in her kidneys were detected and she was sent to a specialist.
“We have been in and out of Children’s Hospital since she was born,” Aimee said.
“She has been struggling with neurological issues because there was swelling in her brain. She also has problems with her eyes, teeth and spine and has chronic kidney disease which was discovered when she was about five or six years old.”
Malformed from birth, Emily’s kidneys function at about 36 to 39 per cent of what they are supposed to, Aimee said.
Her legs and knees have been slightly bent in and she was walking on the interior of her feet, causing calluses and pain.
She was being piggybacked until she got too big.
Aimee had been home schooling her children and continued this practice when the family moved to Port Alberni in 2004. Six years later she decided to put the four youngest in public school. By then, she said she needed to find some balance. Financially, too, daily life was a struggle.
“Before Emily was born, I wanted more kids and I had so much energy,” Aimee said. “But I was permanently exhausted after she was born. All of her medication was a huge learning curve and that was so difficult. I didn’t have a lot of support or help at the time.”
While the children attended John Howitt Elementary, Aimee worked outside the home and found the change helped the entire family’s dynamics.
“Emily just shined in a bigger environment with more people,” Aimee said. “She loves people and talking to them. It was awesome right from the beginning.”
By 2011, Emily started to receive physiotherapy through the Hilton Centre’s Outreach Therapy program. Workers there saw the pressure she was putting on her feet and recommended a trike for getting around.
While she was at AW Neill Middle School, Emily used a loaned bike until she outgrew it, and two years ago was given a customized trike from Variety, The Children’s Charity.
Without it, she would have been forced to walk longer distances in the halls of ADSS.
“We wouldn’t have been able to afford it and Emily would have been limited at school,” Aimee said. “Now she feels good and has more confidence.”
Emily’s education has always been supported with the help of educational assistants which Aimee said has taken some pressure off of her.
“The EAs have gone the extra mile,” she said.
Along with the Life Skills class at ADSS, the assistants provide one-on-one help for Emily with daily tasks and teach her new methods for basic skills she can take with her into adulthood.
“There have been so many people doing so many things for my kids,” Aimee said. “It is not just the school, but our church family. They help with babysitting and giving my kids a fun time when I can’t. They have been skiing and to mini-golf and have experienced more in life than I can possibly do for them.”
Along with riding her bike, Emily now participates in Special Olympics bowling and her health has been improving.
“In the last four years her kidney has stabilized and she is doing well,” Aimee said. “Her feet and legs are getting fixed, her teeth are adjusting and her eyes are stable. Her energy is so much better. Before she would last half a day and then collapse.”
This year marks the 50th anniversary of Variety’s annual Show of Heart Telethon, the signature fundraiser that raises money for children like Emily. It will be aired live the weekend of Feb. 13 and 14 on Global TV.