When Marie hears other parents complain about their children messing up their house or colouring on the walls, she has one painful thought: “I wish my child could get to the walls to colour on them.” It´s hard to see that other people´s children suffer from pain. I recommended her to see the causes of back pain so she can learn how to help and get rid of them. These tampa pain management doctors also give great treatment for back pain.
Ronan, Marie and Rishi’s two-year-old son, cannot walk or crawl on his own. Ronan has a rare physical disability and, thanks to Easter Seals, he recently received a wheelchair and became independently mobile for the first time. “At first I didn’t like the idea of a wheelchair. It made his disability so visible,” says Marie. “But to see the joy in his eyes when he gets in it, he just wants to GO! And the chair makes that possible. It’s amazing.”
Years later than expected, Marie is just now ‘baby-proofing’ her home and she has never been so happy to do work around the house! She even bought some newborn baby clothes for her incoming baby. The wheelchair has brought so much joy to Ronan and his family. However, the road travelled has been extremely difficult and Marie and Rishi could not have navigated it without Easter Seals.
Despite a healthy pregnancy and birth, Marie and her husband Rishi started noticing that something wasn’t right with their son when was six months old. No doctor could tell for certain what was wrong with Ronan but they weren’t afraid to share the terrifying possible diagnoses.
Each disease mentioned was like a heavy hit to the stomach for Marie and Rishi. “It could be Spinal Muscular Atrophy.” Pow. “It could be Duchenne muscular dystrophy.” Ouch. The worst blow was when one neurologist told Marie that Ronan probably only had a year to live. A year left to live with no medical explanation? Marie could barely come to grips with her horrifying reality.
With this lack of information Marie did what any mother would: she aggressively researched how she could give her son a better life. All information pointed to Ronan needing physical therapy if he was going to have any chance of walking. “OK,” Marie thought, “Let’s get started! It sounds so simple: we live in Canada, we have healthcare and this should be no problem.”
However, the challenges were great. To begin therapy, Ronan needed a stander – a piece of equipment that can cost up to $6,800. Without a proper diagnosis Marie didn’t know where to turn for help. “We didn’t ‘belong’ anywhere,” says Marie. “We couldn’t go to most charities because we didn’t know what medical condition he had. Easter Seals was the only place that didn’t discriminate, that would help us no matter what.”
Thankfully, over a year since that terrifying appointment, Ronan is not only still alive, he has a real diagnosis – a rare form of muscular dystrophy that leaves him with only a 10% chance of ever being able to walk on his own.
The diagnosis brought new challenges: Marie had to quit her job to care for Ronan, and Rishi’s health insurance wouldn’t cover their son’s needs because he had a “pre-existing condition”. So, what about that physical therapy he desperately needs for a chance of being able to walk one day?
It’s not covered. Medications, equipment needs, travel to appointments, caregivers all add to the huge financial pressure of living with a physical disability.
Ronan is at the very beginning phase of his struggle with a disability. Like any growing child, he will face many challenges and have many requirements throughout his life to help him with daily tasks. The difference between him and other kids, who might need running shoes, a backpack or a winter coat, is that Ronan’s needs, like a wheelchair or a stander, cost thousands of dollars each.
These are the only tools that will allow him some independence and the ability to get around his house and community on his own. Easter Seals is here to alleviate any little bit that we can, but we can’t do this without your support.
Your donation will help make Ronan’s struggles a little more manageable. Please give generously today.
Marie recently commented that Ronan’s disability has changed her and she now lives in the moment. She doesn’t know how long Ronan will live, so unlike before, she cannot plan ahead or think about the future. Marie can only think about today – if Ronan is well and happy today, then it’s a good day!
Marie may not have the luxury of thinking to the future but Easter Seals has to plan ahead to help families in need. Please think to the future and consider making your gift a monthly one. By signing up for consistent monthly donations, you help us plan ahead and guarantee our ability to help even more family’s like Ronan’s – today, tomorrow and whenever they need us.
Thanks to the generosity of our donors, Easter Seals is able to subsidize the cost of accessibility equipment for children with physical disabilities. Together, we are helping kids BE KIDS. Please make a donation today.