Personal Experiences of Spinal Muscular Atrophy with Respiratory Distress 1
With SMARD1 a child's symptoms are often in reverse to SMA Type 1, with breathing difficulties appearing before muscle weakness.
Doctors may have had to intervene to help the child with these breathing difficulties before they know exactly what is causing them. They may or may not suspect SMARD1 at this stage.
With SMARD1 there is a wide range of severity. Some children are very weak and some stronger. Because every child 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 child may be very different. Care and management can be very complex and potentially difficult and distressing. The children'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 children. If you have any questions, please get in touch with firstname.lastname@example.org