Emberly’s Story

5-year-old Emberly is full of energy and happiest when she’s surrounded by people. She loves bubbles, playing with her older sister, and singing and dancing along to her favourite song, “Roar” by Katy Perry. “She’s really come into her own in the last 12 months,” shares her mom, Amanda. Emberly’s journey to this point, however, hasn’t been easy.

When Emberly was born, she faced a number of health challenges, and her family spent the next few years searching for answers. She became seriously ill at two and a half and was admitted to their local hospital. After a series of tests, Emberly was finally diagnosed with a rare genetic disorder known as PURA syndrome.

Emberly’s PURA syndrome impacts her physical and developmental abilities, as well as her ability to speak, and she experiences seizures. The condition also causes her to have low muscle tone, which can make some activities more challenging, but it doesn’t stop her from having fun. She loves tossing a ball with her family and swimming in the pool, especially on warm summer afternoons. She also has a creative side and delights in making bright, colourful artwork with markers.

While Emberly is generally a very cheerful kid, there are times when it’s hard for her if she can’t participate in the same way as her older sister. “Emberly and her sister are two peas in a pod,” says Amanda. “They love dressing up together, but sometimes Emberly gets upset when she can’t do all the same things. But she’s so resilient, and she’ll usually find her own little ways to make it work.” That same determination carries over into her school life.

Emberly started kindergarten earlier this year and is now attending school full-time. “We are in a smaller town, and the school only has 120 kids, and she absolutely loves it.” Because of the low muscle tone associated with PURA syndrome, Emberly can tire easily and needs extra support for longer walks, outings, and events, even while wearing her ankle/foot orthotics (AFOs). To support her mobility, she brings a specialized stroller to school with her every day. “The stroller is amazing,” says Amanda. “We’ve even added an adaptive tray, so she has a complete independent seat, feeding area, and play table.” With this support, Emberly can take part in classroom activities and join her classmates on outings, like a recent Remembrance Day ceremony. “The stroller lets her move around and be part of the group,” Amanda explains. “It gives her that sense of inclusion, which is so important.”

The stroller also offers a secure five-point harness and a reclining seat, which means Emberly can lean back comfortably and take a nap whenever she needs to. “We were also able to get the full extended canopy that completely covers her, which is helpful because the condition causes her to have a light sensitivity,” explains Amanda. “It just gives her a spot to tuck in and be protected from the wind and sun, which is great.”

The customized features of Emberly’s stroller transform her day-to-day experiences, but they also come with a high cost that can be difficult for families to afford. “With Emberly’s condition, I haven’t been able to return to work,” shares Amanda. “We’re a one-income family, and with the cost of everyday essentials being so high, we simply couldn’t afford this kind of specialized equipment on our own.” Fortunately, Emberly’s family was able to receive support through our Equipment Funding Program that made the purchase possible.

Now, Emberly has a stroller that not only supports her mobility and independence, but also gives her the freedom to explore, participate, and continue growing into herself. “It’s something that will be with her for the next few years … I don’t even have the words to explain how grateful we are for this program,” says Amanda. Our Equipment Funding program is only made possible through the generosity of Easter Seals donors. Thank you for making a real and lasting difference in the lives of children like Emberly.