When the global pandemic hit, you helped Darcey feel safe and comforted in hospital.
Darcey relies on regular infusions to be healthy. She must visit Children’s Hospital, even with the threat of COVID-19. Her mom, Dionne, shares how you have helped her daughter feel safe and have fun.
Darcey loves a good joke.
At just five years old, she’s got a quick wit and energy to burn. Unless it’s a day or two before her treatment at Children’s Hospital.
Darcey lives with an ultra rare genetic blood disorder – atypical hemolytic-uremic syndrome.
She visits the hospital every three weeks for a life-sustaining infusion. Without the infusion, our girl becomes very sick. Her blood clots and her organs can begin shutting down.
The weekend before her treatment she starts to wilt like a flower without water. Her appetite wanes, she feels nauseous and her energy is low.
But as soon as she gets her medication she’s bouncing off the walls once again.
When COVID-19 became a major concern in Canada, we didn’t want to visit the hospital but we had to if we were going to keep Darcey healthy.
VISITING THE HOSPITAL DURING COVID-19
I didn’t sleep the night before her appointment.
With Darcey being immunosuppressed, she has an increased risk for complications from the virus. That’s why we have been self-isolating from the first recommendation to do so.
This has required us to lean on the support of loved ones for assistance in picking up our groceries and running other errands.
We only go outside in our backyard or for walks and bike rides in our immediate neighbourhood, avoiding contact with everyone.
Children’s Hospital is our biggest “outing.”
My heart beat faster as we neared the building for our first appointment since self-isolating. As we stepped through the double-sliding doors, I took a sigh of relief.
Everyone was wearing masks. We had to pass through entrance screening. And, there were protective barriers erected.
It was clear that they were taking this threat seriously. As much as the measures were a relief for me though, it was a little unnerving for Darcey, as you can imagine it would be for any five-year-old.
YOU HELPED DARCEY FEEL COMFORTABLE
Fortunately, you helped her feel safe and have fun in hospital despite all the changes that she was experiencing.
Your incredible generosity ensured our family had access to the Expressive Therapy Programs, including the Child Life Program and Ollie the Therapeutic Clown.
I cannot imagine going through this global pandemic without these programs. They provided a level of normalcy when we needed it more than ever.
Like so many others on the frontlines, they have risked a lot to ensure there is a continuity of care.
Child Life Specialist Erika has been Darcey’s greatest support. Darcey’s appointments are long – taking about four hours each time.
Child Life never says, “no” to her. They are dedicated to making our child feel special no matter what is happening at the hospital.
During one of her recent appointments, Darcey really wanted to play with the big toy kitchen in the nearby hospital playroom.
Even though the room was closed to ensure physical distancing, Erika made arrangements so Darcey could have it at her bedside. Her eyes lit up and a huge smile spread across her face when she saw it.
Erika will also complete arts and crafts with her, bring her sensory toys, distract her with the iPad during difficult procedures, and much more.
Ollie, too, is a bright light on hard days. Lately, he’s been drawing Darcey special pictures. He is so creative and she adores him!
To find such blessings in the midst of uncertainty – we can never repay that or put that into words.
It means so much and we are truly grateful to the Expressive Therapy Programs for their support and to you for making their work possible.
These programs would not be here to help our kids, if not for you! Thank you!
