In an instant the realities of Rett syndrome can come crashing in. Today I read about Rosie who died from complications of Rett syndrome. She was just 14 and the news of her death and that she had Rett syndrome, is all over Britain. It's not because of Rosie though that suddenly Rett syndrome has catapulted into mainstream news, it's because her sister Coleen Rooney is famous - in her own right as a presenter and product endorser but also as the wife of Manchester United and England football star, Wayne Rooney.
Suddenly there are now people describing their life with Rett syndrome on mainstream Sky news. I heard the words "..epilepsy, autism, cerebral palsy and parkinson's all rolled into one little girl. Add to that breathing difficulties and permanent curvature of the spine and being fed through a tube..." and that's all I need to hear before the tears streamed down my face and I was reminded of how well Eva is today and how unwell she could be tomorrow. I'm reminded of how close we are to a cure yet how far there is to go before it is assured to be safe and beneficial. I'm reminded of how such suffering can occur in one little body and yet how fortunate some of us are to have our daughters born in a safe, prosperous country with medical assistance that supports people with disabilities.
I was going to start my new year's blog post about how excited I was to hear of the progress Neuren Parmaceuticals is making with a new drug that will benefit girls with Rett. I was going to share my new year resolution of doing everything I can this year to raise money and support and awareness of Rett syndrome.