We had our beautiful baby girl on Monday 16th May 2016. We couldn't have been more smitten she was just perfect. She was growing into her skin just nicely but after a couple of weeks we noticed she had become very floppy and she found it difficult to control her head.
On her 6 week check she was admitted to hospital as the doctor was concerned about her floppy head, arms legs and in particular her breathing. After several tests, we were told we wouldn't be going home anytime over the weekend as we would have to go to another hospital for further tests. After a week of being in hospital and all the tests exhausted, the bad news was given to us, our baby girl was diagnosed with SMA Type 1 - a life limiting condition.
After a lot of research into the condition, we found that SMA is a very rare genetic condition caused from the SMN genes carried by both mother and father.
If you would like to know more please visit The SMA Trust page.
We want to create more awareness of SMA for those who could also be a carrier of the condition and also to help fund SMA research hoping that one day a cure will be found.
Thank you for reading Amber's story.
