I was born in 1989 with ABS affecting both of my of hands and feet. I’m a few fingers and toes short of a set and the ones that I have come in a variety of shapes and sizes. I was incredibly lucky to receive top care from Sick Kids hospital in Toronto, Canada where I underwent numerous reconstructive surgeries to give me the best possible use of my hands and feet. I have had skin grafts and bone grafts and stitches and I came out relatively unscathed on the other side.
School was sometimes tough and I dealt with bullying like many other people who shared their stories here. Thankfully, I was raised by amazing, loving parents and I had a wonderful, supportive sister. I learned that people’s insensitive comments usually come from a place of curiosity or misunderstanding and can almost always be cured with a bit of education on ABS. While one of my skin grafts occasionally gives me sass, I have had few complications from ABS as an adult.
Thanks to my family and my doctors, I grew up into a happy, confident professional woman. I learned to button buttons, play the recorder (albeit not particularly well), play the piano (any deficiency here was purely from lack of practice), sketch, run, practice yoga, and type out endless law school notes on my laptop. I wear open-toe shoes and bare feet in the summer and tailor my gloves to fit in the winter.
Above all, I want my story to serve as an example for any young people with ABS – or parents of children with ABS – that you can live a normal, happy, full life. Bullying will stop. You will advocate for yourself and your health. You will figure out a way to do whatever it is you want to do in your life. It’ll be awesome.
Happy to answer questions in the comments.