Parents who have Cared for their Infants Diagnosed with SMA Type 1

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 may be different. 

The baby's medical team always involves parents in discussion and any decisions about what can be very complex care. If available, these discussions may involve the possibility of drug treatment.

Shared since 2011, parents whose babies did not access drug treatment describe their personal experiences of hearing the diagnosis and providing care. Our thanks to them all.