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Who this is for

This guide is for parents and carers:

  • whose child has had a diagnosis of Spinal Muscular Atrophy (SMA) Type 3 and
  • whose child has been able to walk unaided and has shown symptoms of losing this ability.

Your child may have been diagnosed with either Type 3a if their symptoms have begun at less than 3 years of age, or Type 3b if their symptoms have begun at over 3 years of age.

In this guide

These pages tell you more about the practical side of caring for your child. They combine information about the healthcare your child may need, along with tips and suggestions that have worked for other families. You may also want to read our information guide: ‘Hearing Your Child’s Diagnosis of Spinal Muscular Atrophy’ which covers the emotional aspect of receiving the diagnosis and some suggestions of who can provide support.

As all children respond to treatment and develop differently, you may find only some of the sections in this guide helpful. Your child’s clinical team can advise you on this.

This guide covers a lot of information and it might be useful to come back to, so you may wish to bookmark this page on your browser or request a printed copy from our office. It is designed to be used alongside medical advice which must always come from your child’s medical team.

Since late 2016, the gradual worldwide introduction of drug treatments for children, young people and adults who have SMA Type 3 has seen positive outcomes for many.

In the UK, the NHS funds the two currently possible treatments for children, young people and adults who have SMA Type 3. Your child’s medical team will talk you through what is known about each one, the benefits and any risks, and with you decide on the one that is the best option for your child.

You may find it helpful to read our summary guide: Drug Treatments for Children in England who have SMA, written for parents considering the possibility of a drug treatment for their child. It covers questions and topics you may wish to consider in discussions with your child’s clinical team. Some of the content may also be helpful for people in the devolved nations.

You can also read our website pages which tell you how these treatments work, the clinical trials there have been and who may be eligible for an assessment for access to the treatments – this varies slightly across the devolved nations:

There is another treatment for SMA, Zolgensma™ (onasemnogene abeparvovec), but due to the way it works, is administered and the clinical trial evidence to date, this is currently only funded by the NHS for eligible groups of children who have SMA Type 1 and for some eligible pre-symptomatic children. You can read more about this treatment and why this is, on these pages of our website.

Whether or not your child receives a drug treatment, your child should receive care and support from members of a multidisciplinary healthcare team, who all have an important role to play. Over time, you may have contact with specialists in:

  • neuromuscular conditions
  • hospital or community
  • paediatrics
  • physiotherapy
  • occupational therapy
  • orthopaedics
  • dietetics
  • general practice and community healthcare
Roles within a team may overlap. For example, a task or assessment may be performed by either a nurse, physio or doctor. Roles may also vary between centres; for example, a nurse in one centre may carry out different tasks to a nurse in another centre.

The aim of everyone involved in your child’s care is that your child will stay healthy and enjoy good quality of life. Your team may refer to the 2017 International Standards of Care for SMA (SoC) which are all about best care for children with SMA. Since publication, however, the new drug treatments have brought change and many unknowns. Clinicians nationally and internationally also constantly review and discuss best care and management practice. This does mean that some recommendations are now changing. Though the SoC remain a useful reference point for a family, your child’s care and the management of their condition will be very individualised, based on assessment of your child by their clinical team and a full discussion of this with you. You can find the online Family Guide to the SoC here.

Different members of the team will meet you regularly both to measure any change in your child’s health and to offer advice and interventions at the right time. They will consider your home and family circumstances as well as your child’s medical and physical needs.

You should be given time to ask questions at every appointment with your child’s team and then jointly, with the team, decide what support and care is best for your child.

You can find out more about who can help in our information sheet ‘Who’s Who of Professionals’.

It is recommended that a child who has SMA should have the same vaccinations as any child in the UK. The only extra vaccinations are the pneumococcal vaccine (over the age of two this should be the vaccine with wider coverage known as ‘23 valent’) and annual flu vaccination.

Your child’s physiotherapist is likely to suggest an individualised exercise programme so that your child can work on their strength, endurance, flexibility and balance. It will include exercises to maintain the flexibility of their joints – especially ankles and knees. Your child may be given supportive splints to help with this. The programme will be built around any physical challenges they are having and what activities they would like to be able to do.

Children diagnosed with Type 3b usually have difficulties with standing and walking later than children diagnosed with SMA Type 3a.

If your child is having difficulty with walking and keeping up or is too old or too big for a buggy, a lightweight wheelchair may be helpful and improve independence. You can discuss what options there might be with your physiotherapist (physio) or occupational therapist (OT).

The vast majority of people who have SMA Type 3 have no breathing problems; though a small percentage have been seen to have a slight reduction in breathing ability.

If your child does have chest infections, your team will want to check the strength of their cough and whether they have any symptoms that suggest difficulties with breathing at night. Symptoms for this are things like: poor sleep quality, headaches, and daytime sleepiness. If they are showing these signs, they may need regular breathing tests. Unless you or your child are concerned, they will not need any proactive management for breathing problems.

In the unlikely event of your child having breathing difficulties, information, advice and options for management are outlined in ‘Looking after your child with SMA who has had a recent diagnosis of SMA Type 2’.

All children can be more susceptible to the effects of poor air quality, for example cigarette smoke. Children who are exposed to second-hand smoke are more likely to contract serious respiratory infections.

Advice on how to quit smoking is available from the NHS Better Health website.

Eating and swallowing difficulties are rare for children, young people and adults who have SMA Type 3.

Good nutrition is vital for the wellbeing of any child who has SMA. If your child is having difficulties with eating or with weight (either gaining too much weight or being underweight) discuss this with your child’s team. They may support you to access dietary advice from a professional, usually a dietician or nutritionist.

A dietician would work out what diet your child needs. SMA-specific growth charts aren’t available yet, so their advice may be based on standard growth charts for children, but your dietician will also take account of other individual measurements for your child. Your child’s diet may be adjusted so that they are getting the right calories, protein, fat and carbohydrates. It would also include the need for the right amount of fibre and fluids (to help with any possible constipation) and nutrients – especially calcium and Vitamin D which are needed for bone health.

A diagnosis of SMA Type 3 and the future uncertainty it brings can have a very big impact on families.

Our information sheet ‘Hearing your Child’s Diagnosis of Spinal Muscular Atrophy’ talks about the this and what support is available.

The Family and Friends / Challenges and Support page of our website may also be helpful.

Depending on your child’s age, our pages about:

may also be useful to look at.

Families living in the UK may be eligible for a number of financial benefits to help towards the cost of providing any extra care their child may need. This does depend on your individual circumstances. For further information, see the Living With SMA area of our website.

Your health visitor, community nurse, neuromuscular care advisor, social worker or outreach worker may be able to help you with applications for financial benefits.

There are also a number of charities that may assist you with the cost of general household goods, specialist equipment and holidays or days out. Please contact SMA UK for more information or see the Living With SMA area of our website.

The International Standards of Care for Spinal Muscular Atrophy (2017) and the guide for families can be read / downloaded from here.


Phone: 01789 267 520

We provide a free Support & Outreach service for families by email, phone, text, zoom and occasional home-visiting. Our experienced team offer personalised support and information and are available to answer questions and talk things through. Though we do not give medical advice, we can discuss with you the support you and your family can access.

If you are wondering about an aspect of life with SMA, we hope the Living With SMA area of our website will be a helpful starting point, giving you useful information and ideas. It builds on knowledge and advice from the SMA Community and SMA UK’s Support Team, and covers a whole host of topics, including: health and wellbeing, equipment, homes, nursery and school, transport, leisure, holidays, financial, and emotional and social support.

You may also find some of our podcasts and webinars interesting – there are always more in the pipeline – and there may be events on offer. Find out more on these pages. You can keep up to date about events, new research developments and much more by signing up for our monthly E-news.

Our Information Team has worked with clinical experts to produce an information sheet for families if their child needs to attend A&E where staff may never have come across SMA before. You can download this from our website to have it ready on your phone.

Any family affected by SMA, living in the UK, can request a free copy of the following book:

  • Smasheroo – written by the mother of a child who has SMA, with illustrations by Mary Hall, this uplifting story highlights that everyone is different and everyone is special in their own way.

The SMA Community – Online Groups

Online groups and social media provide opportunities to connect with other families and potentially hear about others’ experiences and get tips about things like toys, clothing and some equipment. Every child is different and medical advice must always come from your child’s clinical team.

You can find some ways to connect with others here.

Muscular Dystrophy UK

Phone: 0800 652 6352

Provide information, support and grants towards specialist equipment for people affected by a range of neuromuscular conditions.

Contact for Families with Disabled Children

Phone: 0808 808 3555

Contact provide information and support to families who have a child with a disability, including information on benefits and grants.

Image shows the Patient Information Forum logo.Version 7
Author: SMA UK Information Production Team
Last updated: February 2024
Next full review due: August 2026

Links last checked: August 2023

The information provided in this guide, on our website, and through links to other websites, is designed to complement not be a substitute for clinical and professional care and advice.

For more detail about how we produce our information, please see these pages.

If you have any feedback about this information, please do let us know at: