We are often asked about toys and activities for babies and young children with SMA.  You can find suggestions and practical tips,  including many ideas from parents in the SMA community on this page.

We have also made these into a booklet ‘Toys, Play & Activities for Babies and Young Children who have SMA‘. You can download a copy here or request a printed copy.

Families adjusting to the accessibility needs of their children  often ask:

• What do I need to think about and change at home?
• What help is there to do this?
• How do I get it?
• What happens next?

We have put together some answers along with suggestions from the SMA Community and our Support Team. Read More

Many local activities and groups will be keen to include your child. That might be school clubs, Brownies, Scouts, church and other youth groups.

Many national organisations also provide leisure activities for disabled children. They should be able to tell you about any clubs or activities they offer that are local to you. For information about these and ideas about the range of possible hobbies, clubs and sports out there.  Read More

SMA UK offers many ways to connect up with others::

• Virtual networks of parents, partners, grandparents and others – where people share experiences and ask questions.
• Community Podcasts and Videos where people talk openly and honestly about a whole range of topics.
• Community Voices where SMA Community members write about all sorts of experiences and thoughts.
• Community Events that we are running this year

You can also contact our Support & Outreach Team.

There are also many other virtual groups and networks on Facebook, WhatsApp and Instagram. We have listed a number of these on this Online Communities page.

Summer Holidays with SMA

We explore the world of dream holidays and travel essentials through a unique perspective.  Ross Hovey, Maxwell McKnight (adults who have SMA) and Ally Allen (parent of a teenager who has SMA) talk about their experiences. They delve into the world of essential travel gear, adaptive equipment, and must-haves that make journeys smooth and enjoyable:

You can keep up to date with developments in services and research, campaigns and surveys, social and fundraising events and other general information and news by signing up for our monthly E-news.

Assistance dogs

Popular with many families in the SMA Community, they can be trained to help with practical tasks such as:

• Picking up dropped items such as a toy or a remote control
• Opening and closing doors
• Helping with dressing and undressing
• Helping with physiotherapy routines.

This can mean that children are less reliant on others for some day-to-day activities, helping to build independence. Children’s confidence can also increase if they play as big a role as possible in their working dog’s care and training.

As with many dogs, working dogs provide loyal and unconditional friendship and company. They are also a great ice breaker and way of meeting and talking to people when out and about. Registered assistance dogs should be allowed to go with their owner into many public places, such as shops, restaurants and to travel on public transport.

There is, however, a ‘but’, which is that an assistance dog is a serious commitment that needs a lot of thought and planning.

If you are interested in an assistance dog for your child, there are organisations that can give advice. Some train and provide their own dogs; others provide training for people who already have a pet dog. Each organisation has its own application process and training scheme and can give information and advice about the responsibilities of dog owners as well. There are more options for young disabled people aged 16 years and over. The following are available for children under 16 years:

• Assistance Dogs UK 
• Dog AID 
• Dogs for Good (formerly Dogs for the Disabled) 
• Support Dogs 

A break from your caring responsibilities can give you an opportunity to recharge your batteries. Taking a break does not mean you cannot cope or do not love your child. Caring is hard work and it is quite usual for families with children with SMA to have breaks. Short breaks can also give your child a change of scene, a chance to try different experiences, have fun and make friends.

Local authorities now have duties to provide short break services and make clear how families can access these. Short breaks can be:

• Day or overnight care at home with someone else providing the care
• Day care such as after school or weekend clubs or school holiday schemes
• Residential breaks at places such as hospices or activity centres
• Family link schemes where your child stays with another family on a regular basis or occasionally.

Find Your Local Authority (LA) to talk about getting short breaks services in your area and what funding might be possible.

Further information: