Taken from The Mighty July 24, 2017 Author Kylie Grace Obyrne
Imagine countless trips to the doctors and hospitals just to be told there were no answers as to why the symptoms were occurring and sent home with a handful of referrals being passed between medical professionals like an envelope with no return address.
Then imagine, this is your child and all the specialists you have been referred to have no answers. You have hit a roadblock, but as mothers we know when something’s wrong, and we will persist until we have an answer.
Finally you were given an answer; you were told this was a rare genetic condition but no one knew how to diagnosis it. All the symptoms were not related to this genetic condition, and furthermore there is no established “clinical term” for it. What would you do? Where would you go next?
I am a mother. I am not perfect. I have shouted. I have lost my temper and occasionally I need time-out.
I am me. I laugh at things I probably should not. I have felt loss, I have felt pain, I have climbed mountains and tripped over life time and time again.