Personal Experiences of SMA Type 1
For a baby with SMA Type 1, one of the first symptoms to be noticed is muscle weakness. Babies often seem ‘floppy’ before they show signs of having breathing and swallowing difficulties.
With SMA Type 1 there is a wide range of severity. Some babies are very weak and some stronger. Because every baby is different, what is the appropriate medical management for one is not always appropriate for another. Each family's wishes in terms of a care path for their baby may be very different. Care and management can be very complex and potentially difficult and distressing. The baby's medical team will always involve parents in discussions and any decisions.
Our thanks to the families who have shared their very personal experiences of caring for their babies. If you have questions, please get in touch with firstname.lastname@example.org