Growing up with a rare type of dwarfism there were no answers and I learned at a young age that I may never get answers and I learned to be “ok” with that.
I faced a lot of tough challenges from early on. There were doctor visits and surgeries but after so many that became “normal”. Some may wonder how such a thing could be normal to a child but when I was younger I didn’t think much about it. For me it was my way of living.
How do I begin to explain just how much this new research means to me? I could say I’m excited or overjoyed and yes that is true. But it is so much more than that. This has been my life, this has been what I’ve been waiting for.
When most people think about what they want out of life they start to think about a degree, a career, a nice house, a family. But I grew up in the medical world. I grew up in hospitals and doctors waiting rooms and conferences hoping a doctor would be willing to help me. I grew up listening to the stories of my childhood that I didn’t quit remember but wanted to know about because I knew one day I would need to share those with the world.
So when I got that call from the doctors asking if I would participate in the study, there was no “thinking” about it. Before they even finished telling me about it I said I was 100% on board. The doctors explained to me that they wanted me to take time to carefully think of it and my response was “I’ve been thinking about this my entire life”.
In that moment in time as I stood there listening to what they had to say, in my mind I knew I would put my put my life on hold to do this and with that the journey began.