Helping Ella Enjoy Life

“My daughter Ella is all rainbows and lollipops! She is always giggling and makes me so happy. But life as a single mom of three children, including one with special needs, is not always easy. I often feel quite lonely.”

Alyssa Keel lives in the Toronto area and is mom to three young children. Big brother Braeden is four years old, and twin sisters Raegan and Ella are three.

 
I want all three of my children to play and have fun.
— Alyssa

“Raegan and Ella are rare mono mono twins; monochorionic (meaning they shared the same placenta) and monoamniotic (meaning they shared the same amniotic sac). They were born premature at 29 weeks of gestation, and weighed only two pounds, 4 ounces and two pounds, 10 ounces at birth. They spent 80 days in the NICU at Sunnybrook,” says Alyssa.

“I gave birth via emergency c-section. Raegan was born first but it took longer to get Ella out. She suffered a grade 4 (severe) brain bleed. They warned us that it was likely she wouldn’t survive, and a few days later, she almost died. But she pulled through and now, three years later, she is a sassy, strong-willed preschooler!”

But Ella’s birth experience left her with special needs.

“Approximately one week after birth, Ella was diagnosed with hydrocephalus (a condition where there is an abnormal accumulation of cerebrospinal fluid in the brain). And shortly after her first birthday, she was diagnosed with cerebral palsy. She cannot walk, sit unassisted, or stand. She needs lots of support and equipment.”

“It’s a lot of work but my kids make me happy. I’m also very lucky to live in a big city where Ella can attend a special needs preschool, and where we are close to hospitals like Sunnybrook and SickKids. But my experience has changed my dream of what it would be like to have three kids. I’ve had to adapt, and I often feel very lonely. I don’t fit in. Most single moms don’t have as many children as I do, and many don’t understand the challenges I face with a special needs child. It’s hard to join their activities. For example, in the winter, they like to meet at indoor play centers, but the slides and games aren’t accessible to Ella. I want all three of my children to play and have fun.”

“It’s not easy to find accessible places, and finances in general are also a challenge, but I want Ella to have fun, to enjoy life, and to play in the park too. I do everything I can to help all my children live life to the fullest.”

Why CHILD-BRIGHT Matters to Me
“CHILD-BRIGHT matters to us because our story is only one of many; each family has a unique voice and story to be told, and in doing so, we open the possibilities of helping other families and children with different abilities. I always hope that our story will connect us with those families with similar stories, so that we can all feel understood and valued. It is my hope that the difficulties my children may face or that our experience navigating the system may help other families in the future, so that one day brain injuries, and cerebral palsy, will no longer feel so isolating.”