Mary Detweiler is overcome with emotion when she thinks of those who helped with the purchase of a wheelchair lift for her family’s van.
The lift had become a necessity, particularly in the winter, as her 8-year-old daughter, Julianna, grows and continues to struggle with Aicardi syndrome, a rare genetic disorder that affects perhaps 1,000 people around the world.
“We thank them so much from the bottom of our hearts,” Mary said of those who helped raise about $7,000 – which will allow the family to have the lift installed over the Christmas holidays.
Last weekend, the family received a $5,000 cheque from Shoppers Drug Mart’s Working in Support of Hope [WISH] Campaign. Mary said her brother-in-law, Alan McLeod, a property manager with Shoppers, was instrumental in securing the generous donation.
“I was in disbelief,” she said of her reaction upon hearing the good News. “I had to get [McLeod] to say it two or three times … I shed a few tears.”
McLeod, however, said the credit should go to WISH campaign coach Robbie Krofchick and the other committee members: Drew Baillie, Carolyn Bryan, and Sandra Martin.
“They are all truly wonderful people and the WISH committee helps a lot of people and charitable organizations throughout the entire year,” McLeod said.
“These people generously give their personal time and receive nothing in return except the satisfaction of knowing people will have better lives because of them.”
Krofchick explained the committee hosts several fundraising events throughout the year and often supports colleagues and their families as part of the campaign. The committee approved the $5,000 for Julianna’s lift on behalf of all Shoppers Drug Mart employees.
“It was given in the support of hope,” Krofchick told the Advertiser. “It’s one part of our community investment program … We’re only too glad to provide some assistance to this family.”
The timing could not have been better for the Detweiler family.
“I was relieved,” Mary said, noting Julianna is the same size as many kids two years her senior. “It was getting to the point we can’t lift her anymore.”
The new lift will also allow the family to pass on Julianna’s old wheelchair – which she had outgrown but the family sill used because it made transportation easier – to someone else who needs it.
Mary and her husband, Harold, first realized something was wrong with their first child during the pregnancy. Around the due date, Mary began experiencing a fluttering sensation. At first the couple dismissed the feeling, but a test revealed a cyst the size of a small lemon on the right side of their daughter’s brain.
Detweiler was rushed to McMaster Children’s Hospital in Hamilton for a Caesarean-section, and subsequent tests at The Hospital for Sick Children in Toronto revealed Julianna had Aicardi syndrome.
Julianna was born without a corpus collosum, the bridge that connects the two hemispheres of the brain and allows them to communicate. She has lesions in her retinas, which have a debilitating effect on her eyesight. She also suffers different types of small seizures every day and is developmentally delayed.
Before her first birthday, Julianna had five surgeries to remove the cyst on the right side of her brain, which left her partially paralyzed on her left side. But now she is active and alert, loves to laugh, and attends St. Mary Catholic School in Elora, where she is helped by an educational assistant.
The Detweilers also receive help from a Red Cross worker six hours a week, as well as a personal support worker, Sara, who takes Julianna out, allowing Mary and Harold to complete household chores or spend time with their other two children, Jessica, 5, and Devin, 3.
“Sara loves Julianna like her own child,” Mary said emotionally of Sara. “She’s just like part of our family now.”
While the family is extremely thankful for all the help it receives on a regular basis – as well as the financial help that will allow them to purchase the lift for their van – there are still other needs for Julianna.
A “Lift Up Julianna” trust fund through the Royal Bank in remains open and any amount raised over and above the cost of the van lift will be put towards a ceiling lift for the family’s home, to assist with bathing. The family also wants to build another room off the bathroom for Julianna so Jessica and Devin no longer have to share a bedroom.
There are fundraisers ongoing at her daughter’s school and at Harold’s workplace, Toyota Boshoku in Elmira, and anyone wanting to donate to Julianna’s trust fund can contact and Royal Bank branch.
“I thank everyone for their support,” Mary said.
