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, says. “She was diagnosed later than most cases, at six months old. It took a while to get our diagnosis. At the time, she was just a little weaker than most children, a bit slow; she hadn’t been able to lift her head consistently, she was having trouble keeping food down, a lot of small symptoms that were kind of separate that we didn’t quite know how to how to piece together until the diagnosis came. She was actually premature. She was born at 33 and a half weeks.”
… Ella is rapidly outgrowing her car seat. 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.
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. Additionally, although she is verbal, Ella can be, as her father describes, “a little difficult to understand if you don’t know her.” Because of this, she uses a communication book or a tablet with communication software. 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.
Kids don’t choose to have a disability, but functional equipment that reflects their unique, bright personalities truly helps kids BE KIDS.
Like for many families with disabled children, COVID-19 has delayed Ella and her family receiving the equipment, but 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. The car seat she’s using is effectively the booster seat that she got four years ago, and it’s getting unsafe to use, and it’s getting very uncomfortable for her to use. She’s getting bigger than the car seat is meant for. We can make 10 – 15 minute trips when she has her appointments at SickKids, but she’s always getting uncomfortable by the time we get to our destination because the car seat she has right now just isn’t quite good enough, and there’s nothing mass available. So getting something like this means that we can go on longer car trips. We have family in Ottawa; we have family near Collingwood. At best, we’re looking at a couple of hours drive. It’s been the kind of trip that, even without COVID, has been very difficult for us to plan because we have to be very mindful of how long Ella can be in the car and still be comfortable. With this new car seat, having the ability to travel farther, to travel comfortably 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, doing 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.”
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