We are sharing Iris’ experience with GM1 for the first time using social media. It’s a brave new world and here we go!
I love my daughter Iris deeply and I would do anything for her. I want to share her story and to raise awareness for GM1 and rare diseases. Honestly, I’m still dreaming of a cure. I’ve been told that it would be better to be realistic and to just accept the terminal prognosis. I understand the reasoning behind that advice. We know the odds. Daily, we try to preserve our family’s quality of life. We are also absolutely dedicated to ensuring Iris is as comfortable and happy as possible.
Perhaps this blog will be a personal therapeutic outlet, yet also helpful to others. Perhaps, there can be meaning in this utterly devastating twist of fate. I hope that by sharing our story, we will be a resource to the newly diagnosed and to the families of those who suffer from GM1. Welcome and thank you for reading!