You may find these books helpful when talking to your child about their health and well-being:

Our SMArt World. Written for children age 7 – 11. It’s all about SMA and living with the condition. It includes a lot of the information on the page Explaining SMA to your child >.

Smasheroo is written for younger children:

Any family affected by SMA and living in the UK, can request a free copy of each of these books: You can order theme and other items through our shop > 

The way SMA impacts children  has changed since treatments started. This has meant that the way the condition is managed and the care needed has also changed. This is why expert clinicians and patient representatives are now agreeing on new guidelines for care for children, young people and adults.

There are many areas to think about – from managing the impact on breathing, spine & hips, exercise & activity to nutrition.

Guidelines will generally be about how to manage symptoms. Some guidelines will be related to other important information about the impact of a person’s SMA. Age may also matter for some.

In the meantime, talk to your clinical team if you have any questions or concerns about your child’s health.

These cover a range of topics that may be of interest. They include ones on drug treatments, physio through play and diet.

Watch and listen now >

All children experience a range of emotional ups-and-downs as they navigate our complex world. Disabled children can face additional stresses and challenges. They may become anxious, frustrated or angry about the barriers they face.

Read more >

Some children who have SMA have difficulty opening their mouths and with swallowing. This can make cleaning teeth and dental care challenging. Added to this, local dentists may not be wheelchair accessible. They may not be set up to treat children who need careful positioning.

Your child may need to be seen by the NHS Special Care Dental Service. Ask your child’s speech language therapist, dietitian or other member of their clinical team or GP for advice.

Your child’s team should work with you to develop an Emergency Health Plan (EHP). This records the treatment you wish your child to receive if there is an emergency or if their health deteriorates. Although these discussions can be difficult, they are important and should be had before a child is unwell. If your child has breathing and swallowing difficulties you would expect a more detailed plan.

With your permission, this plan can be shared with professionals supporting your child. That makes everyone aware of your wishes. This can include ambulance services. You should have your own copy of your child’s EHP so that you can give it to hospital services if you’re away from your home area.