Aspen was born with a rare genetic disorder known as Rett syndrome… found in approximately one in every 10,000 girls.
Aspen is always happy. A bright and bubbly seven-year-old, she is known to light up the room with her big smile and warm spirit. “Aspen has a twinkle in her eye… She’s a snuggler, and she just loves getting kisses and hugs from her family,” Aspen’s mom, Nikki, describes affectionately.
Aspen was born with a rare genetic disorder known as Rett syndrome. Rarely seen in boys, Rett syndrome is found in approximately one in every 10,000 girls. The condition affects brain development and often results in mental or physical disability and shortened life expectancy.
In Aspen’s case, the condition has severely impacted her physical abilities. “It affects every single aspect of her life,” Nikki explains. “It affects her speech, her muscle tone, she can’t use her hands. She has seizures and gastrointestinal issues.” Aspen can only eat pureed foods and cannot feed herself. She is entirely dependent on the unwavering support and care of her family and caregivers.
“She’s so smart and can understand everything that’s going on… She’s just locked in her body, and her body can’t do what she wants it to do.”
Aspen, however, is very intuitive and loves to interact with the world around her. “She’s so smart and can understand everything that’s going on,” Nikki shares. “She’s just locked in her body, and her body can’t do what she wants it to do… She can’t talk, but she will find her own way to communicate and interact.”
Being non-verbal, Aspen will often use facial expressions, noises, or certain actions to communicate with her family and friends. At school, Aspen is learning to use an eye gaze computer to communicate her needs and participate. Aspen is currently in Grade Two, and just started attending school in-person last year. For the first three weeks, Nikki sat at the back of Aspen’s classroom or worked out in the hallway to help with the transition. Aspen is now able to attend a reduced school day five days a week, but is often home sick due to her compromised immune system.
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Whether at school or at home, Aspen relies on many different mobility and accessibility equipment pieces to get through her day. Nikki is in the process of renovating their house to improve its accessibility and has just had a ramp built. Aspen also uses a wheelchair, a stander, a special chair for sitting at the table, an adapted bike, and she hopes to soon have a walker. Through the support of Easter Seals donors, Nikki was recently able to get Aspen a specialized car seat. The new car seat makes travelling safer and more comfortable for Aspen, as she is getting too heavy and too long for standard car seats. The best part about the new cart seat, however, is the special swivel feature that helps with transferring Aspen in and out of the car. “I have to bring her to school and back and multiple appointments in a week,” Nikki explains. “I was really struggling, especially when you add in a backpack, extra clothes, winter jackets, and leg braces. It was very difficult to manoeuvre her into the seat.” As a result of all of the lifting and transferring, Nikki unfortunately suffered a torn rotator cuff, underscoring the importance of the new car seat. “It has made a huge difference.”
The total cost of the car seat was approximately $3,500. While we are happy to have played a part in helping Aspen access such an impactful piece of equipment, there are still many items that she needs in order to experience greater safety and ease in her daily life. The next item Nikki plans to request support for is a commode chair for their bathroom at home. The chair would make bath time easier and safer, as Nikki would not have to worry about difficult, slippery transfers as Aspen continues to grow. The commode chair could also make it possible for to Aspen to achieve a new level of independence through toilet training. There is currently no government funding available in Ontario for commode chairs, so your continued support is instrumental in ensuring the well-being and progress of kids like Aspen.
“Having the support, it takes a little stress out of the family’s lives. It makes our lives a little easier. It’s amazing, and we are so thankful.”
The costs of raising a child with a physical disability can be overwhelming. Even with the support of our Equipment Funding Program, Nikki often has to run her own fundraisers to help to get Aspen the many pieces of equipment she needs. Your donation today, no matter the size, can help alleviate the financial burden Easter Seals families face. “Even a donation of $10, $20, 0r $100, it makes a huge difference,” Nikki shares. “Having the support, it takes a little stress out of the family’s lives. It makes our lives a little easier. It’s amazing, and we are so thankful.”
We extend a heartfelt thank you to each and every one of our donors for the positive impact you bring to the lives of families like Aspens. Despite the progress we’ve made, there are still many essential items Aspen and other children like her require to experience greater safety, dignity, and independence in their daily lives. Your ongoing support is pivotal in bridging these gaps. Thank you for standing with us in this journey, your generosity truly makes a world of difference.