It was last January (2011) when I was in the middle of my busy working day, when a segment on The View came on television. (Yes, I worked with the tv on. No, it didn’t distract me 99% of the time!). A gorgeous little girl and her loving parents were on to discuss a condition called Rett Syndrome. At this time, we had not begun any sort of investigation into why Jovie was ‘behind’ and had never heard of Rett Syndrome before. The Gutierrez family and Anna had me transfixed and what they were saying set off alarms in me.
Here is that segment –
Yesterday, Anna Gutierrez passed away. She was 4 years old.
I am FOREVER grateful for the Gutierrez family, for Anna and for The View for spreading the awareness of Rett Syndrome. Without that 10 minute segment, I would not have looked into it myself and would of been in the dark about this condition for months and months. I wouldn’t of had the balls to bring it up in our first paediatrician’s appointment, and wouldn’t have the guts to face reality so early on in our journey.
Many girls will pass away from Rett Syndrome and it never gets any easier.
To say we need to find a cure is a given, and I’m hopeful that they will find a cure. In the meantime, I will carry the Rett Syndrome Awareness torch for as long as I can, and hope that these girls are never forgotten.