Literal Strangers Help Remove Barriers
When three-year-old Niamh (pronounced Neeve) was born she was unresponsive for 17 minutes which resulted in her having cerebral palsy and West Syndrome, a very rare condition involving global developmental delay, epilepsy and infantile spasms. Her parents, Amber-Lee and James, were told to be prepared that Niamh may not be able to do anything, but she is a fighter and has surpassed all expectations. She is now fully cognitively aware and starting to use her hands and to communicate both verbally and by using a tablet.
“She is the smartest little thing just stuck in a body that we are trying to help her fix,” says Amber-Lee. Niamh uses a G-tube for feeding and wheelchair for mobility. Through a special Keto diet her infantile spasms have quieted, calming her brain significantly.
“Once the spasms calmed down, it was like a cloud lifted – she was able to focus and started learning and interacting more. Now she is gaining strength and growing like crazy. It was literally a miracle to us,”she explains.
In addition to swimming and playing with her older brothers, Niamh loves to get out and play at the park with other kids. However, because Niamh uses a wheelchair it can be challenging to move her around, which is why Amber-Lee and James applied to Easter Seals for funding to help purchase a portable ramp to assist in getting her in and out of her home.
“I didn’t realize how expensive things could be. This equipment is not a luxury, it’s a necessity. It helps your child physically move and have the same rights as other children – the right to be independent, the right to access their house and their bedroom,” adds Amber-Lee. “You have helped us remove a barrier that was slowing Niamh down – now she can easily access her home!
When asked if there was anything she wanted to say to donors, Amber-Lee stated: “It’s hard to accept [charity] because as a parent you just want to be able to pay everything yourself. You are admitting you need help and you’re admitting your child has a disability. And that’s very hard.
However, it takes a community to raise a child, and for a child with a physical disability it takes strangers to help them have the best life. It’s wonderful donors, literal strangers, helping to make that difference for your child – people who give out of the goodness of their heart because they know it matters.
Sincerely, thank you – there are such few resources out there to help families, and it is greatly appreciated.
A Bright Future Ahead
My name is Manya Nayak. I have had cerebral palsy since birth. This condition has impacted my mobility as well as vision and fine motor skills. In fact, it was in search of better healthcare and accessibility that my family and I moved to Canada when I was nine years old. I have had quite a good journey since, and I am now 23.
I am happy to note that I have focused intensely on my academic life and achieved considerable success. As a result, I have just graduated from the University of Toronto with High Distinction and have also been accepted into Osgoode Hall Law School to pursue a legal education starting in 2021. This education will greatly enhance my career opportunities and help me gain financial independence. I am very excited to start this new chapter in my academic and professional life.
Throughout this process, I am thankful to the donors and supporters of Easter Seals for providing me with funding through scholarships, mobility equipment, etc. Progressing this far would have been considerably more difficult had it not been for the generosity of Easter Seals. On the same note, I have recently been awarded the Easter Seals Ontario and the Kevin and Christy Kelly Scholarships. I hope to use the funding from both scholarships to buy a new computer system that will be more appropriate in navigating the intense academic needs of law school.
I hope that through my legal education, I can gain a voice in society and thereby pay forward the support I have myself received. In terms of more personal goals, my love for gaining an understanding of how businesses work and interact with each other draws me towards corporate law. This being said, I am keen to go into the legal field with an open mind and explore the various facets of the law.
– Manya Nayak,
2021 Easter Seals Scholarship and Kevin and Christy Kelly Scholarship recipient
You can help kids like Manya by contributing to an Easter Seals scholarship. For example, for $500 we can create a scholarship in your name. For more information, please contact Alison Morse at amorse@easterseals.org or 416.510.5070.
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:
Kayley Trumbley
Tel: 416.421.8778 ext. 361 • Toll-free: 1.800.668.6252 ext. 361
ktrumbley@easterseals.org
Programs Help Family Understand They Are Not Alone
When I received Kalea’s diagnosis of cerebral palsy I looked it up on the internet and saw a child in a wheelchair. My world stopped.
At three years old, Kalea had selective dorsal rhizotomy surgery and then the long rehab began – living in a hospital for six weeks before continuing day sessions. At the same time, we were choosing suitable schools and other activities to help her development. This created an enormous mental stress with so many life-changing decisions to be made and trying to look after all the family at the same time.
We were first introduced to Easter Seals Ontario when we were invited to Family Camp at Camp Merrywood. We learned we were not alone as every family had one thing in common – we all had a child with a disability.
“This created and enormous mental stress with so many life-changing decisions to be made and trying to look after all the family at the same time.”
For one whole week, many of our daily challenges faded away as activities were completely accessible to ALL, and no one was left out because they had a disability.
Seeing the way the children were included in absolutely every aspect of camp life brought tears to our eyes and taught us how we may be able to make our lives more accessible for Kalea.
As Kalea got older, we began to learn even more about how far Easter Seals helps families. Equipment such as walkers, wheelchairs and more specialized items are extremely costly, and many families could not afford these items if not for the assistance of Easter Seals
After a few years of attending Family Camp, Kalea wanted to attend camp independently. The friendships she developed at camp lasted throughout the school year with everyone counting down the days until the start of the next year at camp. Kalea’s wish is that every child gets to go to camp. We have personally seen the positive impact Easter Seals has had on not only our own family, but also on the families of the many friends that Kalea has made during her time at Easter Seals camps and events. Thank you to everyone who makes this possible for families like mine.
– Andy, Kalea’s dad
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