Mobility Equipment Gives Kyle the Opportunity to Get Out and Be Involved in His Community
Kyle is an incredibly bright and cheerful kid with a range of quirky interests like the weather and numbers. “I don’t think he sees himself as different from any of the other children,” says his mom, Jeannie. But for Kyle, mobility has always been a challenge.
Kyle was diagnosed with spastic diplegia before his second birthday. “He was born really premature,” says Jeannie. Kyle’s spastic diplegia means that the muscles in his body are weakened, specifically the muscles on the lower half of his body.
For Kyle, it is very important that he strengthens his leg muscles. “We’ve been told that he’s not going to be able to walk on his own the way you and I can. He’s going to need some kind of assistive device so having the walker is a great way to keep him mobile, accustomed to being in that upright position,” says his dad, Paul. Kyle uses a wheelchair or walker whenever he goes anywhere. Having the right supportive equipment is essential to helping Kyle develop his leg muscles and walking abilities.
Unfortunately, getting the equipment Kyle needs has not been easy for his family. It comes as a shock to hear the sheer number of pieces of equipment Kyle requires and their costs. Coming up with the money to cover all of Kyle’s equipment would be a massive endeavor for any family – especially for a family with three young sons, as in the case of Kyle’s family.
Paul explains the difference that having a proper walker makes in Kyle’s life; “being able to get outside, use the walker, it’s great for him to continue different ways to strengthen the muscles and be upright, it helps the hamstrings keep the knees straighter and again the weight-bearing on the legs so all very positive.”
Kyle’s parents describe him as an incredibly determined and lovable kid who enjoys getting out and being involved in his community. Kyle’s education assistant shares that whenever a classmate is upset, Kyle will ask, “do you need a hug?” One of his classmates adds that, “Kyle is like a rainbow, we can’t wait to see him and he makes everyone feel happy!” He is always looking for new ways to be a light for those around him.
“Words can’t explain how grateful we are for the help that we’ve gotten,” says Jeannie. “A lot of this is impossible without the generosity of other people. Right from the month following him being born, we’ve needed assistance and it’s through the generosity of other people that we’ve been able to bring him home and have the supportive equipment for him,” adds Paul. Through your generosity, you have helped give Kyle the opportunity to get out and be involved in his community.
Thank you for your support!
A New Car Seat Lets Ella and Her Family Enjoy Car Rides Again
Think of a typical family car ride: blasting the music as loud as possible, eating too many snacks and long games of I-spy with siblings. Car rides are often cherished childhood memories and have also been a great comfort to many of us during the pandemic. But for seven-year-old Ella, car rides are a luxury.
Ella has Pompe disease, which weakens all of her muscles, especially the upper body and respiratory system. “It’s basically a form of muscular dystrophy,” Ella’s father, Pierre, explains.
This overall muscular weakness means that Ella requires support for everything that she does. She uses a manual wheelchair and ankle foot orthotics for her mobility, a breathing machine while she sleeps, full-time nursing staff to help with feeding through a G-tube, stretching or school activities. She also uses a car seat for both long and short car trips. Ella, however, is quickly outgrowing the standard children’s car seat she is currently using. Pierre says that Ella can only tolerate about fifteen minutes before she is in extreme discomfort, so they applied to Easter Seals for a custom car seat.
Pierre can already see a whole new horizon of possibilities for Ella and their family. “Right now we’re limited in where we can go with Ella,” says Pierre, “With this new car seat, having the ability to travel farther, to travel comfortably, it makes all the difference in terms of staying in touch with family, in terms of finding activities and outings that Ella wants to participate in, and finding a way for her to get to those destinations to see family to make new memories and to have fun with rest of us.”
Even though she needs a little extra help, Ella is still your average kid who makes the best of every situation. She is a social butterfly who loves playing with her older sister Claire. She enjoys going to school and seeing her peers, arts and crafts, and watching Peppa Pig on her tablet. When asked about Ella’s favourite part of the new equipment, Pierre says, “The fact that it’s new and green is fun, and the fact that she’s able to pick the colour. I think it’s important for her to be able to choose.”
Kids may not choose to have a disability, but functional equipment that reflects their unique, bright personalities truly helps kids BE KIDS.
Forever In Their Corner
As a loyal donor to Easter Seals Ontario, it’s clear you’re passionate about making the world a more welcoming place for children with physical disabilities. You’ve given kids the chance to be part of a team and to be more confident, as well as provided them with opportunities to chase their dreams. You can help make the world more inclusive for children and youth with physical disabilities even after you’re gone through a gift in your Will to Easter Seals Ontario (charitable registration #119068377 RR0001).
For more information, please contact:
Tel: 416.421.8778 ext. 361 • Toll-free: 1.800.668.6252 ext. 361
“It’s All About Celebrating What He Can Do!”
Although his situation has not been easy, Lorenzo is thriving. He is a happy kid who loves roughhousing and wrestling with his dad, listening to music, and playing with his little sister Mila. “Now with this equipment he can be more physically comfortable. He has thrived much more than we anticipated,” added Kathy.
Six-year-old Lorenzo had “a rough start to life,” according to his mother, Kathy. Despite having a normal pregnancy with no indication of Lorenzo having any health issues, he was born four weeks premature. Just hours after birth, he suffered twelve seizures and doctors told his parents he wouldn’t survive. For Kathy, “It was difficult being postpartum and constantly hearing from doctors ‘he’s not going to make it.’”But he did.
Lorenzo was eventually diagnosed with cerebral palsy quadriplegia and requires full-time care and support for all that he does. He is nonverbal and highly spastic, meaning most of his muscle movements are unintentional or involuntary. As a result, he uses a wide array of equipment to help him achieve the best quality of life possible. Much of his mobility relies on a manual wheelchair. He uses a stander to support muscular development and take a few steps, and he uses a custom bath seat in the shower. He also uses a booster seat like many kids his age. However, a standard car seat does not provide enough support, and he would often cry in pain. So, Kathy applied to Easter Seals for help funding a custom car seat for Lorenzo.
Though COVID-19 slowed the process, Lorenzo has finally received his car seat. Now he is enjoying car rides with his family, a small joy that provides a sense of stability, especially after the pandemic caused so much disruption to his routine.
Kathy is immensely grateful for the support they have received for Lorenzo. While programs like ADP cover 75% of equipment cost, even if a family has insurance coverage, it is still quite costly. She says, “Programs like ADP and insurance are great, but insurance is one time coverage, this can be problematic as Lorenzo is a growing boy. He also requires diapers and that can be expensive without support from the incontinence grant. Thank you, without organizations like Easter Seals it would be a lot more difficult… and Lorenzo, he is thriving now. It’s all about celebrating what he can do.”
A New Lift Makes Life Safer and More Comfortable for Millie
Trina foresees the benefit of the Hoyer lift for the whole family and their support team. “We’re getting older, she’s getting older, she’s getting heavier… it’s going to help save our bodies so we can take care of her for as long as we can and make it more comfortable for her too,” Trina explains.
Every parent likes to think of their child as a rarity, but that is especially true for nine-year-old Millie and her mother and father Trina and Jordon. Millie was diagnosed with muscular dystrophy at a year and a half, after physicians noticed that something was wrong during her three-month check-up. She was also diagnosed with the TBC1 Without Kinase genetic mutation at age six. At the time of her diagnosis, Millie was one of fifteen people worldwide to have TBCK. Her conditions have resulted in low muscle tone, complete immobility, and global developmental delays. She is also nonverbal, but will often emit what her mother calls“screams of happiness.”
Due to her low muscle tone, Millie uses a manual chair for movement, a stander, Ankle-Foot Orthotics, a trunk brace and wrist guards to keep her body aligned as she grows, and a BiPAP and Cough Assist machine at night to support her breathing. As Millie grows, lifting her for transfers is increasingly challenging, so Trina and Jordon applied to Easter Seals for funding for a Hoyer lift.
Despite her challenges, Millie does get to enjoy some of the simple things that most kids her age do. She attends school with a one-on-one Educational Assistant and loves social interaction with her peers. She also loves cartoons and will take any opportunity for a swim.
When asked what she could say to donors if she had the chance, Trina didn’t even have to think. “Obviously thank you! That’s a big one. I think what people don’t realize, if you’re not a special needs parent, is that if you don’t have a diagnosis, there isn’t much support out there… the nice thing about Easter Seals is that it’s open to everybody… Easter Seals is such a great organization because it helps so many individuals with varying types of disabilities and in so many different ways. There’s camp, equipment funding, and the incontinence grant program just to name a few. There are so many things that people with “typical” families don’t have to think or worry about. It’s hard when you’re not in this community to truly understand the impact that Easter Seals has… it is incredible! From the bottom of our hearts, we thank you, and the entire special needs community thanks you.”
Make a Meaningful Impact!
Not only do your donations have a positive impact on the day-to-day lives
of children with physical disabilities and their families, for some children the impact is life-changing