Follow along as Anchel Krishna shares her experiences as mother to Syona, an extraordinary toddler with cerebral palsy.
Back in the fall we were asked if we would share our story for an Easter Seals direct mail campaign. I immediately responded yes. Last year, Easter Seals funded Syona’s wheelchair stroller and walker. These items have opened up Syona’s whole world—they not only help her work on her walking (especially after her Botox), they also allow her to explore and enjoy her surroundings by positioning her body in such a way that she can participate actively in the world around her.
Read more: Why I let my kid get Botox>
Parenting a child with special needs grows your heart in a way that I can’t quite describe. It also empties your bank account equally as fast. We’re fortunate to live in Ontario where a large portion of items are funded by the government, but there remain significant costs that families need to cover: Syona’s wheelchair stroller cost almost $10,000, of which the government funds 75%, leaving us to cover the remaining $2,500. I am grateful that the majority of equipment is covered, but the costs that aren’t quickly add up for families (especially in the early years when you are often purchasing several items all at once). In addition, there are other items that the government does not fund at all. Often these are basic items—like adapted toilet seats and bath seats—that allow kids with special needs to do basic tasks safely.
As Syona gets older we will likely continue to work with Easter Seals—they offer the funding program we’ve used as well as a number of other wonderful programs, including some super awesome, completely accessible camps.
Because Syona was featured in the Easter Seals direct mail campaign, we recently had the opportunity to attend a Toronto Blue Jays game courtesy of Easter Seals and the Jays Care Foundation. This was Syona’s first game and she loved it. It reminded Dilip and me of one of the first times she laughed: We had been watching a ball game on TV and, when someone hit a homer, Dilip leapt to his feet and shouted “home run!” Syona proceeded to laugh hysterically. It is one of my favourite memories of our early days as a family. So the fact that Syona enjoyed her first ball game, had a chance to meet Ace (see photo above!) and met some amazing families was a pretty awesome way to spend a Tuesday evening. We’re definitely planning to catch another game soon.
We were also asked to participate in the Easter Seals telethon this past weekend. It featured celebrities and a few awesome Rogers Media personalities, including Erin Davis from CHFI who interviewed us. We were so thankful to be able to share our story. Organizations like Easter Seals make a huge difference in the lives of families like ours, and kids like Syona. The telethon raised more than $2 million. If you missed it or still want to support Easter Seals, you can still do so online.
Sharing our story is one way Syona, Dilip and I give back to organizations that help support kids with special needs—and the families who love them. I couldn’t think of a better cause.
Does your family volunteer or support specific organizations? What difference does it make in your life?
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