Amelia’s Story

You can tell when 9-year-old Amelia is happy. Her excitement comes through in high-pitched squeals, infectious giggles and the enthusiastic clapping of her hands. “Amelia is incredibly sassy and joyful. And honestly, she’s really just the best kid,” shares her mom, Samantha.

Amelia may not communicate through spoken words, but she has no trouble sharing her joy with the people around her. Whether she’s laughing with her cousins, playing with her little sister Charlotte or playfully teasing her family, it’s clear how much she loves being part of the fun.

At just two years old, Amelia was diagnosed with an exceptionally rare degenerative disease. The condition affects her brain and nervous system, impacting her hearing, communication, development and mobility. Because the disease is so rarely found in girls, her family has been left with few answers about what the future might hold.

For Amelia and her family, life can be unpredictable. “She could have a skill one day and wake up the next day and it could be gone. We just never know,” explains Samantha.

In her nine years, Amelia has already undergone seven surgeries, lengthy hospital stays and numerous medical procedures. Despite everything she has faced, Samantha says her daughter has a remarkable ability to adapt, accepting each new challenge and finding joy in the moment, even when things are difficult.

“She’s really the one who holds the family together,” shares Samantha. “She’s the one who’s more able to navigate those difficult moments and kind of forces us as her family to get in line with that approach, to be like, nope, we’re going to figure it out.”

That ability to adapt is especially important when it comes to Amelia’s mobility. After years of therapy and hard work, she took her first steps when she was just over three years old. Today, while Amelia can walk on her own, even short distances can leave her in pain and make it difficult to take part in the activities she enjoys.

Through Easter Seals Ontario’s Equipment Funding Program, Amelia’s family received funding toward a manual wheelchair. Although she doesn’t need it every day, having it available when walking becomes too difficult means Amelia can continue enjoying outings and activities with family and friends, without her mobility challenges cutting those experiences short.

“Sometimes we’ll go out and she’ll tell us she doesn’t need her chair today. But it’s always in the car and she has access to it if she changes her mind,” explains Samantha. “Other times, she’ll be having a rough day and it’s the first thing she’ll ask for.”

Having the wheelchair also means Amelia can take part in school outings and field trips alongside her classmates, experiences she has sometimes had to miss in the past because of her mobility challenges.

“Amelia has experienced a lot of things in her life that have left her excluded,” shares Samantha. “So for Amelia, having access to the right mobility equipment has been the difference between inclusion and exclusion.”

Having access to a manual wheelchair is also opening up possibilities for Amelia that once seemed out of reach.

“We’ve just recently been teaching Amelia how to actually push herself in her wheelchair. And for the first time in her life, she has a level of independence that she’s never had before,” shares Samantha.

When Amelia moves her wheelchair on her own, her excitement comes through in joyful squeals and enthusiastic clapping. But perhaps the sweetest part is that she wants her mom to share in that happiness.

“When she does use the wheelchair independently, she looks at me and asks me to celebrate with her.”

For Samantha, ensuring Amelia has the support she needs isn’t always easy, and some of the biggest challenges are ones that others may not see.

“A lot of people think our life is so difficult because of all the extra support Amelia needs,” explains Samantha. “But the reality is, that’s actually not the hard part. The hard part is the financial strain on our family.” That’s where Easter Seals Ontario has made a meaningful difference.

“Without the support from Easter Seals, we would not have been able to purchase the wheelchair,” shares Samantha.

For a family navigating so much uncertainty, having been able to turn to Easter Seals Ontario for help accessing essential mobility equipment offers a welcome sense of reassurance. While they cannot predict how Amelia’s needs may change, that support has provided some stability in an otherwise unpredictable situation.

“We can’t change the situation that we’re in. It’s just not in our control, but we can control giving her access to things that will make it easier. And Easter Seals has helped us with that,” says Samantha.

Thanks to the generosity of Easter Seals Ontario donors, Amelia has more opportunities to explore the world around her, enjoy everyday moments with the people she loves and celebrate each new achievement, one joyful squeal and clap at a time.