Meet Lilly

Seven-year-old Lilly loves to learn. 

An explorer at heart, she spends her weekends with her family visiting different parts of the city and trying new things. Right now, she’s fascinated with learning about days, months, and how to read a calendar. She also just learned how to throw a ball, and tosses anything in the shape of one with a laugh.

It’s a long way from the days her mother, Narges, remembers when Lilly couldn’t even move her head.

Just after her first birthday, Lilly was diagnosed with 1p36 deletion syndrome. It’s similar in some ways to Down’s syndrome, and the condition can be mild or severe.

As a baby, Lilly didn’t squirm and wriggle around. She didn’t wave her hands in the air or try to grab her little toes. In fact she rarely moved at all.

“It’s hard to describe how I felt in those early weeks and months. I remember standing over her crib in the middle of the night, shifting her position so she wouldn’t get sore from lying in one place,” Narges says.

But, after turning to Holland Bloorview for help, Lilly took her first steps when she turned four. Narges thanks the attentive physiotherapists for that milestone.

“Holland Bloorview is our second home,” says Narges. “Everyone was as passionate as I was to see Lilly’s success and progress.”

And while Narges admits some days were harder than others, she appreciates every little baby step along the way.

“We were told she would never walk and for a year she couldn’t even move her head, but finally with all the work and help and fights we did it,” says Narges.

“Lilly is still not talking, she’s non-verbal, but I try to work with her and we do our best. Maybe it’ll happen, maybe it won’t, but we try and work to help her be the best she can be.”