Thanks to donors like you, Everly can travel safely to school, appointments, and ballet class.
At 9 years old, Everly has an outgoing, cheerful demeanour that draws people to her wherever she goes. “She’s witty, funny and constantly happy… she is a bright little light,” shares Sarah, Everly’s mom.
Along with her vibrant spirit, Everly lives with an inherited medical condition known as congenital disorder of glycosylation, or CDG, that affects her ability to move and speak. Her specific subtype of CDG is so rare that only 22 people worldwide are known to share it.
Sarah first sensed something might be wrong when Everly struggled to sit up on her own. “Our oldest daughter was sitting by 6 or 7 months old, and Everly wasn’t even close to it,” recalls Sarah. They reached out for a medical opinion, unknowingly beginning what would become a four-year journey toward a diagnosis.
“Everly uses a wheelchair full time and is completely dependant on equipment for all things mobility.”
“We went through a ton of genetic testing,” shares Sarah. “We actually only got the diagnosis through the highest level of genetic testing, which you can only get done if you are part of a research study in Canada.”
Despite the long road to diagnosis, Everly has become a sociable and cheerful little girl. She enjoys spending time with her family and her best friends. “She absolutely loves family movie nights and playdates with her close friends from school”. She also enjoys swimming and dancing—and recently celebrated a milestone by completing her first year of ballet.
“Unfortunately, many dance studios turned us away. But the studio we are at now has been phenomenal.” Everly uses a wheelchair, so her dance studio lowered the bars and allowed her to participate at her own pace. “She was able to complete her whole recital performance in her wheelchair, and I don’t think there was a dry eye in the house.”
You can help provide children like Everly with the tools and opportunities they need to thrive. Donate now to transform lives.
It was a proud moment made possible by a supportive community—and the equipment she relies on. “She uses a wheelchair full time and is completely dependant on equipment for all things mobility,” Sarah explains.
Through our Equipment Funding Program, Easter Seals Ontario has been able to help Everly’s family get some of the essential mobility and accessibility items she needs, like a van ramp and a specialized car seat. “At her age and size, she can’t fit into a standard car seat, and it would just not be safe for her,” explains Sarah. These items are critical pieces for Everly, as they make it possible for her to travel to school, attend her appointments and participate in activities like ballet class.
In addition to the van ramp and car seat, Easter Seals was also able to help with funding for a new bath seat for Everly. The bath seat helps Everly safely enter the bath, and enjoy some much-appreciated autonomy and independence. “At this age, she doesn’t want to be held by mom or dad in the bath. This seat is supportive and allows her to sit and do her own thing—we don’t have to be so hands on. She’s a huge Taylor Swift fan, so now she can just relax, enjoy her music and play in the bath.”
“When you walk this life, you don’t always realize the costs that are going to be involved… With Easter Seals’ funding there, it just helps with the financial burden and alleviates so much of the stress.”
These equipment items are not luxuries or fun toys—they are necessities that support kids like Everly with everyday living. But as Sarah explains, even with government support, many practical, day-to-day items fall through the cracks, especially for families navigating a rare diagnosis. That’s why she sees one of the most valuable aspects of Easter Seals Ontario’s Equipment Funding Program as its focus on need rather than diagnosis, making support available to a wider range of children and families. “Easter Seals doesn’t pick and choose what condition they will help, and that has been a huge thing for us. We aren’t eligible for a lot of funding because Everly’s condition is so rare.”
For Sarah, Everly, and the rest of their family, the support from Easter Seals Ontario has made a meaningful difference in their daily lives. “When you walk this life, you don’t always realize the costs that are going to be involved… With Easter Seals’ funding there, it just helps with the financial burden and alleviates so much of the stress.”
Thanks to the generosity of donors like you, children like Everly can access the essential equipment they need to thrive at home, at school, and in their communities. Thank you for making a lasting difference.