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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 2 and
  • whose child is having difficulty with standing and / or walking

In this guide

These pages tell you more about some of 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. You might find some sections in ‘Looking After Your Child who has SMA Type 3’ more helpful.

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 2 has seen positive outcomes for many.

The impact of SMA Type 2 and how children respond to any drug treatment varies greatly from child to child and may change over time.

In the UK, the NHS funds the two currently possible treatments for children, young people and adults who have SMA Type 2. 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:

Another treatment you may have heard about is Zolgensma™ (onasemnogene abeparvovec). 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’s medical team will talk with you about every aspect of care your child will need.

They may refer to the 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 rapid 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.

Your child should receive care and support from a multidisciplinary healthcare team. The number of people in this team can feel a bit overwhelming, but they all have an important role to play. You may have contact with specialists in:

  • neuromuscular conditions
  • hospital or community
  • paediatrics
  • physiotherapy
  • occupational therapy
  • breathing (respiratory) care
  • orthopaedics
  • dietetics
  • speech and language therapy
  • general practice and community health care
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 a good quality of life. Different members of the team will meet you regularly, both to measure and monitor changes in your child’s health and development 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.

It is recommended that anyone with SMA should have the same vaccinations given to 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.

Children with SMA who can sit but who have difficulties standing, need specialist support for their posture and mobility. Your child should have a specialist neuromuscular physiotherapist (physio) familiar with the impact of SMA Type 2, to support them and design a personal exercise routine for your child, which may include exercises to help to:

  • encourage good posture
  • encourage active movement
  • maintain and strengthen muscles
  • maintain and further develop their range of motion
  • reduce any discomfort
  • stretch any tight muscles
  • relieve any joints that are tight

If, due to difficulties with movement, your child experiences any pain from any tight joints (contractures), regular gentle stretching, as advised by their physio, can help to reduce this. If your child does have any pain, it is important to talk to their clinician and physio.

Your child’s physio may suggest exercises for in the bath, hydrotherapy pool or local pool, as children often enjoy the additional freedom of movement provided by water. Hydrotherapy is not available in many areas but speak to your child’s team about your local facilities and what might be suitable for your child.

Your child’s physiotherapy programme should also include active exercises. The programme may be carried out by the family or an assistant at school/ nursery once they have been trained by the physio.

Regular moderate exercise will help with your child’s fitness and energy levels. Activities like swimming and horse riding can be adapted to suit your child and are a fun way to exercise. As fatigue is also common in SMA, your child should not be pushed too hard; their specialist physio will be able to advise.

Supported standing is good for many things including breathing, blood circulation, bladder, bowels, bones and joints. Your physio will advise you how often and for how long. Any equipment to help with standing e.g. standing frame, KAFOs (knee ankle foot orthoses) or gaiters must be supplied and assessed regularly by your child’s physio.

Your occupational therapist (OT) will advise you what sort of seating will give your child the best, most comfortable support so that it is easier for them to play with toys, eat independently and join in at home and at school.

Your physio or OT will provide any equipment needed to support your child’s standing and positioning. Some children may be assessed as needing splints (sometimes called orthoses) for support. These would be made to measure specifically for your child by an orthotist, who would explain how to use them and how they can help.

Children with SMA who are able to sit and are as young as 14 months can often manage to steer a ‘Wizzybug’ or ‘Bugzi’. Using one of these ‘first wheelchairs’, with their fun practical design, means they can explore and join in with other children and members of the family. Later, depending on their motor development, they may need to use a lightweight manual wheelchair or a small, powered wheelchair which will make a big difference to joining in at nursery or school and when going out. These are all important and positive ways to encourage your child’s independence. Your child’s physio and OT will be able to advise you what will work best for your family.

Find out more about Wizzybug and Bugzi on the Powered Mobility tab on this page.

To make sleeping more comfortable, your OT may suggest your child has a sleep system. This uses wedges and rolls (usually made of foam or fibre) to support their back, arms and legs in a straighter, more comfortable position while they are sleeping. They can also give you advice about any other adaptations and equipment that will help with your child’s everyday home and school activities, such as writing, playing, washing, dressing and eating.

As your child gets older, your team will keep an eye on what impact their SMA and muscle weakness is having on how straight they can sit. Even with drug treatment, SMA can weaken the muscles which support the spine, and, without this support, the spine can be pulled by gravity and curve. When the spine starts to curve sideways into a ‘C’ or ‘S’ shape it is called a scoliosis. When the spine bends forwards it is called, a ‘kyphosis’. Your child will be monitored and if there are signs that this is happening, they may be provided with a spinal brace.

It is widely agreed that spinal bracing may delay progress, but not prevent scoliosis developing. Your child’s team will monitor your child carefully, based on their individual needs and situation. If your specialist physio assesses that your child needs an individually fitted spinal brace (or jacket), they will refer your child to the orthotics department where this will be custom-made. Your physio will explain when, and how often, your child should wear their brace.

If your child’s spine is curving beyond a certain point, they should be referred to a spinal consultant for monitoring of their spinal posture. If needed, surgery may be suggested and will be discussed fully with you.

Why breathing (respiratory) difficulties are common for children and adults with SMA Type 2

When we breathe in (inspiration), certain muscles act as bellows to expand our lungs and enable oxygen to be pulled in. The diaphragm – which is attached to the base of the breastbone (sternum), the lower parts of the rib cage, and the spine – contracts. This increases the length and diameter of the chest cavity and expands the lungs. The muscles between the ribs (intercostal muscles) help move the rib cage to also assist in breathing. SMA causes these intercostal muscles to be weakened, which can result in a ‘bell shaped’ chest and poor inspiration. This results in reduced lung volume. SMA doesn’t impact so much on the diaphragm itself.

When we breathe out (expiration), we get rid of waste gas (including carbon dioxide) from the lungs. This doesn’t need particularly strong muscles as it is a passive movement. However, to cough, you need strong muscles to be able to clear secretions.

Weak breathing muscles are common for children, young people and adults who have SMA Type 2. This can result in breathing problems, particularly when asleep (sometimes called sleep disordered breathing) which is a leading cause of health problems.

If children do have problems, it is often due to having a weak cough and only being able to take in smaller breaths. Every child is affected differently, but the main problems caused by weak breathing muscles are that:

  • It makes it difficult to cough and therefore clear mucous (secretions) from the lungs.
  • The lungs cannot get rid of enough of the waste gas produced by breathing – which includes carbon dioxide. This is known as ‘hypoventilation’.
  • It may make it difficult to take in enough oxygen while asleep.

Support from a respiratory specialist

If your child has breathing problems, their clinical team will include a specialist respiratory consultant and respiratory physio. The team understands the possible impact of SMA and will get to know how it is affecting your child, so will be able to discuss the different appropriate options with you. You can also talk to them about any worries you have about managing your child’s breathing and what to do in an emergency.

Regular respiratory checks

Though breathing problems occur less often than for children who are unable to sit, the 2017 Standards of Care (SoC) still recommend that children should have a physical examination at least once every six months. At this appointment, children should have their breathing checked. If they can understand how, they will use a machine called a spirometer and the strength of their cough will also be measured.

If your child has poor sleep quality, headaches, or daytime sleepiness these may be symptoms of night-time breathing difficulties, in which case you would expect them to have an overnight sleep study. Sleep studies should be routine to pick up possible hypoventilation before any symptoms appear. If this is done in the hospital, small sensors are attached to your child’s face, head, arm and chest and they are monitored overnight. Since the covid-19 pandemic, more studies are done at home, though hospital versus home practice varies across the UK. If the sleep study is done at your home, your child will have a small clip on a finger, which will record information. In-hospital sleep studies are more thorough, as home studies are only able to monitor oxygen and (sometimes) carbon dioxide.

All these tests help the clinicians and you decide on the best options for managing any difficulties your child may have with breathing.

Possible options for managing breathing

If your child does have a weak cough, it is difficult for them to clear mucous and other secretions from their lungs and it makes them more vulnerable to chest infections. There are a number of options to help manage this, which you can discuss with your child’s respiratory specialist and clinical team. Not all of them will be appropriate for your child.

Even if your child’s breathing is usually fine, they may struggle to deal with a chest infection compared to children without SMA. One or more of the following options may be needed to support them whilst unwell.

Options that may be discussed include:

  • Chest physiotherapy to keep your child comfortable and help clear secretions from their chest. How often children need this varies. You will be advised how often is best for your child and you may be trained and supported to do chest physiotherapy yourself.

If your child needs any equipment, you will be given training and support to use it.

  • Cough assist is the name often given to a mechanical insufflator – exsufflator machine. This helps to clear secretions from your child’s lungs. Your medical team will discuss if it would be helpful for your child. It may be possible for older children to be shown how to manage to use this themselves.

Our 2021 video about Cough Assist for Younger Children may be helpful:

  • A suction machine to help remove your child’s excess secretions. If this is needed, your physio or another member of the team would talk to you about why and when you should use it.
  • Non-invasive ventilation (NIV), a machine with a mask to provide gentle pressure to enhance breathing and expand the chest with each breath. This can help your child get rid of carbon dioxide and take in more oxygen, making breathing easier. The mask is individually fitted for your child by a respiratory specialist. When your child’s breathing triggers the ventilator, it delivers a supported breath in. As they start to breathe out, the machine cycles into exhalation, allowing them to breathe out normally. There are a number of different products available; BiPAP is one example.

Every child is different and the timing to start NIV is based on individual assessment. Your child’s respiratory specialist will talk with you about if and when your child would benefit from starting to use NIV.

Our 2021 video about Non-Invasive Ventilation for Younger Children may be helpful: 

Information from sleep studies may lead to your child’s respiratory specialist advising a change in the NIV settings so that they better suit your child’s needs. Settings should only be changed if advised by your child’s specialist.


  • Medication may be prescribed by your child’s team to break down secretions (mucolytics).
  • Antibiotics may need to be prescribed quickly for your child if they are at risk of, or to treat, a chest infection. Your child’s team may talk to you about whether or not they recommend antibiotics are taken regularly as a way of trying to prevent chest infections (prophylactic use).

Air Quality

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 a serious respiratory infection that requires hospitalisation. Children with SMA who have respiratory challenges are especially vulnerable.

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

Good nutrition is vital for the wellbeing of any child who has SMA.

Due to their muscle weakness, your child may have difficulties with chewing food and find eating tiring. If they cannot swallow safely, there will be a risk they might inhale (aspirate) food which can cause choking and chest infections. Your child might need an assessment by a Speech and Language Therapist (SALT).

Eating difficulties can mean children do not get enough food and may become underweight. However, some children can become overweight because their muscle weakness makes it difficult to exercise. Extra weight can increase the stress on muscles, bones and joints, making positioning, physical activity and breathing even more difficult.

Team members who can give you advice and support on safe eating and diet include: your consultant; dietitian; Speech and Language Therapist (SALT); Occupational Therapist (OT); Physiotherapist.

Regular checks

You may find that mealtimes take longer if your child is having difficulties chewing and swallowing food. You will be able to discuss any concerns with your clinical team at your child’s regular clinic checks. To help them gain a clearer picture, you will be asked if your child has been bringing back up what they’ve swallowed (gastroesophageal reflux), had difficulties passing their bowel motions (constipation), or been sick (vomiting).

The 2017 Standards of Care (SoC) recommend that all children who are able to sit have their diet checked soon after diagnosis. For younger children this should then be every 3 – 6 months, then annually once older.

If your child has choking or coughing episodes when feeding or eating this may be a sign that they are inhaling their food (aspirating) and should be investigated. It is not always obvious if someone is aspirating as it can be silent. If your child has frequent colds or respiratory infections this may be a sign of silent aspiration.

If needed, a swallowing assessment would be carried out by a SALT. The test recommended to assess swallowing is called a Video Fluoroscopic Swallow Study, which uses a type of x-ray and swallowing of a special drink.

Guidance for Diet

A dietician should 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 will be adjusted if they are underweight or overweight so that they are getting the right calories, protein, fat and carbohydrates. It will also take into account the need for the right amount of fluids and nutrients – especially calcium and Vitamin D which are needed for bone health.

Due to weakness of the muscles of the bowels it is common for children to become constipated. This can lead to discomfort and a fullness in the stomach that reduces the movement of the diaphragm which in turn restricts breathing and coughing. A fibre-rich diet may be recommended along with extra fluids. Your child may also be given medications to help.

Currently, professional opinion is divided about whether the Amino Acid diet, which is based on an elemental formula, is beneficial. Professionals do agree that the type of diet and how it is given should be based on each child’s individual reactions and should be regularly reviewed.

It is very important generally that your child has plenty of fluids, especially if they are unwell. You will be advised about correct amounts and how often. Your clinical team will be keen for your child to restart food during an illness, as soon as it is safe to do so.

Making Eating Easier

If your child has had difficulties, your team will talk to you about the best positions for eating and drinking. They may also suggest which foods to avoid that are more difficult to chew and swallow.

Pureed food or a semi-solid diet can help with chewing difficulties and can reduce the length of mealtimes. Thicker liquids such as milkshakes might help avoid aspiration.

Children who struggle to feed themselves can dislike not being able to be in control and having to depend on others. Long mealtimes due to eating difficulties can also put pressure on other family members and activities. Your physio and OT will be able to suggest positioning and seating options and orthotic devices if your child needs help to eat more independently. Mobile arm supports are helpful for some children, so may be recommended by your child’s OT or physio.

Some families have found it helpful to use valved straws which reduce the effort of drinking by keeping the liquid at the top of the straw.

If Eating Is More Difficult

If your child is unable to swallow safely and/or not gaining enough weight, your team may suggest additional ways (such as the examples mentioned below) for them to take in enough food safely. You should be given time to discuss this and ask questions about the reasons for any suggestions so that you understand the possible benefits and risks for your child.

Whichever option is agreed, you will be provided with training and support so that you can give your child food safely at home.

Additional short-term options may include nutritional liquid food through a:

  • Nasogastric (NG) tube – a thin flexible feeding tube passed through the nose into the stomach
  • Nasojejunal (NJ) tube – through the nose into the middle part of the small intestine (the jejunum)

A longer-term option could be a:

  • Gastrostomy (PEG) tube – placed in the stomach via a surgical procedure and also called a PEG – percutaneous endoscopic gastrostomy. Children who have a PEG tube to help them gain weight are usually encouraged to eat some food by mouth.

Looking After Teeth

Because of their muscle weakness it may be difficult for your child to open their mouth wide. This can cause problems with eating and with teeth cleaning and dental care. Regular dental check-ups are important, and your team can suggest ways to manage difficulties and help prevent complications.

It is important that you know how to access medical care in case your child has a respiratory emergency. Your clinical team can arrange open access to your local children’s ward.

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 they can be difficult, these discussions are important and should be had before a child may be unwell. The team will discuss possible respiratory problems and the different ways that these can be managed.

The plan can be reviewed at any time, and you can change your mind about what intervention the EHP records that there should be.

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

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.

Families living in the UK may be eligible for a number of financial benefits to help towards the cost of providing the extra care their child may need. This does depend on your individual circumstances. For further information, see our Financial Support & Benefits page.

Your health visitor, community nurse, neuromuscular care advisor, family support worker, 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 section of our website.

Your child may be able to use a standard car seat; ask your child’s physio or OT for their advice. If it is too upright for them, or if they are uncomfortable in their car seat, talk to your physio or OT about any suitable alternatives that provide recline options and enough support. A small neck support and additional head support may also be useful.

Your physio or OT may refer you to a Regional Driving Assessment Centre (RDAC) which will work closely with a child’s therapist to offer advice on car seats. You can find details of this service and where the centres are on the RDAC website.

Some children may need equipment when they travel and / or some may need a carer beside them to monitor how they are. Your physio, OT and respiratory team are the people to talk to about how to meet your child’s individual needs. If travel is challenging for you and your child, ask your clinical team if it is possible to organise access to hospital transport to get to and from appointments.

If, over time, you find you need a wheelchair accessible vehicle (WAV), this can potentially be leased through the Motability Scheme if a child is over 3 years old and receives the enhanced (higher) rate mobility component of Disability Living Allowance (DLA). If your child is under 3 years, has complex needs and meets eligibility criteria, the Family Fund Mobility Support scheme aims to give access to a lease car tailored to a child and family’s individual mobility requirements. Some parents purchase their own vehicle. Others secure their child and wheelchair in an accessible taxi.

Any buggy or wheelchair secured in a WAV or accessible taxi must be a model that has been crash tested.

The Blue Badge scheme is run by local authorities. This entitles people with severe mobility problems to parking concessions. Although the minimum age for Blue Badge applications is 3 years, in certain circumstances it is possible to apply for children under 3 years old with medical conditions which require them to be accompanied by bulky equipment, or if they need to remain near their vehicle in order to access treatment. To find out more about these special circumstances and how to apply for a Blue Badge visit the GOV.UK website.

SMA UK can also help with information on car seats that have worked for other families and possible sources of funding.

If your child cannot use a car seat for medical reasons, you can contact your GP for a certificate which will explain why – this is a ‘certificate of exemption from compulsory seatbelt wearing’. You will need to carry this document at all times in your car. For more information on this, visit: Seatbelts: the law on the GOV.UK website.

The emotional impact of a diagnosis of SMA Type 2 on families comes with the need for rapid decision making about drug treatment and the logistics of organising family, home and work life around this. The 24 hour-a-day responsibility of caring for your child can be physically, emotionally and psychologically exhausting.

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

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

In time, our page about children’s emotional and psychological mental health and well-being may also be useful to look at.

Even though you will be focused on your child, it is important to look after yourself as well. Remembering things like keeping up to date with your own health checks and getting the ‘flu’ and any Covid jabs is important.

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.

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.

You will find more information about the possible drug treatments here:

This website section tells you about other research and treatment developments.

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

MDUK provide information, support, advocacy services 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.

Children’s hospices

Phone: ‘Together for Short Lives’ on 0808 8088 100

Located throughout the UK, these offer a wide range of services and support to children and families; some also offer short breaks. What support is possible does though vary across the country. Details are available from the Together for Short Lives website.

Image shows the Patient Information Forum logo.Version 8
Author: SMA UK Information Production Team
Last updated: February 2024
Next full review due: August 2025

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: