This is a blog post I wrote on the Swedish Forum Familjeliv.se on January 26, 2007:
“On 18 September 2006 our little angle was born. She was perfect and we were so happy to have got such a pretty girl. At the 2-month check up the paediatrician discovered that she had wasn’t moving the way she should be, and we were referred to Children’s Hospital for further check-ups. On the 15th of December we were given the nightmare diagnosis that our little girl had spinal muscular atrophy type 1, and that most of these children die before the age of 1 year. So now we are sitting here waiting for the inevitable, that her muscles will become weaker and weaker. That she will no longer be able to eat by herself, and finally not being able to breathe any longer. HOW on Earth will I be able to handle this?? Is there someone who has something helpful to say? We are trying to be brave for her sake, but our hearts are right now breaking from all the grief. ”
If you know someone in a similar situation, please send them my link. It’s not about me, it’s about all those desperate parents that I might be able to offer a glimmer of hope. THANKS!