Recently Diagnosed With SMA
Receiving a diagnosis of SMA often comes as a shock and can be very difficult for everyone involved.
We hope you will find a guide here that will help as a starting place for information and suggestions. They draw on the International Standards of Care for SMA (2017) and the experiences of families and adults affected by the condition.
This guide includes: safe and comfortable positions for your child; how to support their breathing, feeding and movement; at home and out and about; support and other resources.
A summary for parents who want to know more about Spinraza and what treatment could offer. It is intended to be used in your discussions with your child’s medical team.
This guide includes: supporting your child's posture, movement and mobility; breathing and eating; transport; support and other resources.
In here, you can read practical tips and suggestions for safe and supportive play for different ages and stages, including ideas shared by parents of children who have SMA.
This guide includes: supporting your child's exercise and mobility; breathing and health eating; support and resources.
This guide includes: getting a diagnosis; posture, movement and exercise; diet and breathing; fatigue and pain; support and resources.
Over time, you are likely to have contact with a number of different health, education and social care professionals. This lists many of them and the team you might meet, with a brief description of what they do.
SMA is a complex medical condition. You may come across new words and terms. This may be a helpful mini 'dictionary' for when you are unsure of what they mean.