A day in the life of: Lorelei “Kiwi” Smith
Kiwi, age 8
Growth condition: Sotos syndrome
Typical morning: Kiwi is usually cuddled up under her favourite blankies and her stuffed animals, and removing her isn’t always easy. I change her, get her dressed, and I do her morning medications and her morning formula in her feeding tube. If it’s a weekday, she goes to school. She is in 3rd grade.
Typical afternoon: Sometimes she’s home playing with toys and watching her favourite show, or she’s on her way to one of many doctor appointments, an outing with family, or school.
Typical evening: Kiwi spends time with her big brother, plays in the sink sometimes while Mom starts to get dinner prepared, and watches her favourite show. She has her night-time medications and pm tube feeding, then she rides her stair lift up to her bedroom and gets tucked in for bed.
My favourite thing to do is: Watch Puppy Dog Pals or play in the sink (I love water!).
My least favourite thing is: When I have to stop doing something I’m really enjoying. I don’t like having to stop!
The best thing about having Sotos syndrome is: At 8 years old, I’m already almost as tall as Mommy, so that’s pretty cool!
The most challenging thing about having Sotos syndrome is: Frequent wardrobe changes, Mommy needs to buy new clothes all the time because I outgrow everything so fast.
One piece of advice I would give to someone who has this growth condition and/or is a parent carer of a child with this growth condition is: Try to ignore people out there who might stare a little too long or make comments, their ignorance isn’t your problem.
One thing I want to share with others about life with a growth condition is: It’s a unique journey!
