The Strength of Rare: Life as a Koolen-De Vries Syndrome Patient, Parent, and Caregiver, Part 1

Written by Becky Tilley

My name is Becky Tilley and I am a rare woman, mama, writer and advocate. Also am proud wife to my husband Carl and mother to three beautiful children: Isabella, age four; Joshua, age two; and Avary, age 10 months. My two youngest children & I share a rare chromosome disorder called Koolen-De Vries syndrome. After initially giving me the diagnosis, my geneticist also mentioned that KdVS was most likely the cause of the learning difficulties I encountered as a child.

Immediately my mind flashed back to the red faces of a few very frustrated teachers in my first school. I was labelled a slow learner and put in special education classes all through my school years for math & English. I was treated as a misfit & outsider by a lot of my peers and as no teachers were aware of the rare disorder I was living with, I soon adopted the belief I must just be stupid. My parents did the best they knew how to, but every time I struggled to learn made it very difficult not to feel limited in what I could achieve.

However, I did find a subject at school which I loved greatly: English. I still remember enthusiastically putting my hand up during spelling tests to read out my answers. It was the only lesson in school I had where I was confident and enjoyed what I was being taught. I would write little stories and draw cartoons to animate them and had lots of books as a child. Having something I enjoyed in life where I felt a sense of achievement made a difference to my happiness. No matter what happened on the playground, I had that thing at school I loved to do. The thing that was fundamentally missing though was self belief. I always had the mentality that I was less than everyone else around me and I didn’t measure up. This belief stayed with me through to adulthood and had a negative impact on my work life.

I would flit from one job to the next, never feeling like I was good enough or that I fit in. I ended up so fed up with how life was going that I thought it was time to try something new. I remembered one of my tutors from college telling me how well suited she thought I would be for a career in childcare. This came after performing the story William Tell at a primary school, she said I was so fantastic with the children that it would be worth looking at a job working in childcare. I laughed off the idea to my family who all agreed with my tutor that with my kind, nurturing and encouraging personality, a job with kids would be a good fit. So decided I had nothing to lose and after volunteering one day a week in a nursery school I found they were right. The kids needed attention, kindness, caring, nurturing, celebrating and encouraging and I did these things all naturally.

Continued in Part Two