My name is Becky Tilley. I live in the UK, am married, and my wonderful husband Carl and I have three children: Isabella (age four), Joshua (age two), and Avary (age one). Myself and my two youngest children share a rare chromosome disorder called Koolen-de Vries syndrome. My son and I received our joint diagnosis 14 months after his birth in 2021 and Avary’s was confirmed in 2022. After initially being blindsided by guilt that my children inherited a life long disorder from me, I chose instead to have gratitude that I can be a role model, providing support, strength and comfort to them that nobody else can.
I offer them strength in being an example of a life filled with passion, purpose and joy so they will have hope for what is possible for them to enjoy and achieve. Not only that by celebrating and being secure in what makes me the same as them but different to the norm will encourage them to follow suit. I know the mental, emotional and social struggles that having a rare disorder can bring. I’ve been the kid that was a target for bullies in the playground and felt stupid in the classroom for what I couldn’t learn the same as my peers. That means I can offer them compassion and understanding when they meet others who don’t value who they are or how they operate. Also I get to teach them the value and necessity of loving and appreciating who they are as they are even when others don’t.
I once more than anything just longed to fit in and be accepted as one of the crowd. Now I care about being authentically me above all else. After always having a deep sense that I am not like the majority of people, being diagnosed with Koolen-de Vries felt like my permission to embrace it. As it revealed that genetically I am different, same as my two youngest, and it was then down to me to decide what kind of example I want that to make me for my children to look up to. My advocacy is very much a part of what I want my children to witness, as from a very young age, during my time in special needs classes for English I developed my love to write. My hope is my kids will also discover that thing they love to do and that it will be a support & enjoyment to them, especially when the world feels lonely. I always had a sense of achievement at school when reading and writing as I was good at it and it was the only class I truly looked forward to.
Even now I feel much the same, I am not naturally academic or practically minded and have to work very hard at being organized. That said, what does come naturally is my love to encourage through writing. I love to offer hopeful stories to the world as there was a time I had very little of that, feeling on the outside looking in with nothing of value to give.
That thinking has been radically transformed and I am now confident that I do offer something very helpful by sharing mine and my family’s journey with all the lessons I am learning along the way. I will always support all three of my children to find what lights them up inside and to express it whole heartedly, as for me it has changed who I am and how I live for the better. When my kids watch their mama living with Koolen-de Vries syndrome I want them to feel hopeful, supported and encouraged that their differences can be their strength if they let it.
That’s not to say they will never be challenged or life won’t be extremely hard at times as it most definitely will but learned later in life that it helps going through it to love who you are, as you are.
What I want rare parents especially to take away from this story is what feels like the breaking of you to begin with, hearing you passed on a rare disease to your kids can actually be the making of you. By choosing not to let your rare disease define you and instead deciding for yourself what your diagnosis means for you and your family, you can show your kids and the world that being rare is a strength to be celebrated.
