Since late 2016, the gradual worldwide introduction of drug treatments for children who have SMA Type 1 has seen positive outcomes for many.

There are now three drug treatments funded by the NHS for children who have SMA Type 1, though not every treatment is suitable for every child. 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 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:

• Spinraza™ (nusinersen)
• Zolgensma™ (onasemnogene aberparvovec)
• Evrysdi™ (risdiplam)

Whether or not your child receives a drug treatment, your child’s medical team will also talk with you about every aspect of care and support your child will need.

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

• neuromuscular conditions
• hospital or community
• paediatrics
• breathing (respiratory) care
• physiotherapy
• occupational therapy
• dietetics
• speech and language therapy
• palliative care
• general practice and community health care

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 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 medical team and then jointly, with the team, decide what support is best for your child.

It is recommended that all with SMA should have the ‘standard’ immunisations plus the pneumococcal vaccine and, when over 6 months of age, the annual influenza (flu) vaccination.

The 2017 SoC also recommend that children up to the age of 2 years are protected against a common virus called respiratory syncytial virus (RSV) which can cause breathing problems. These vaccinations are only given once a month during bronchiolitis season (October – March). We suggest you ask your clinical team for the latest advice on NHS funded access to these.

The great variation in how children are individually impacted by SMA, and also in how they respond to drug treatments, makes it difficult to give general advice about safe and comfortable positions. Your physiotherapist (physio) or Occupational Therapist (OT) will advise you on the best options for your child. The following, more general points may be helpful – not all will apply to your child:

• All babies begin by lying flat. Progressing to supported sitting or lying in a semi-reclined position will depend on how easy your baby is finding it to breathe and how their muscle strength and head control are developing.

• Deeper breathing is important as it can help to prevent mucus building up in your child’s lungs. Your child also needs to be able to swallow safely and manage any saliva and secretions.
• It is important for your child to strengthen their neck and back muscles; your physio will advise on positioning and any exercises you can encourage and supervise to help with this.
• It is also important to seek advice on best positioning in general from your physio, OT or respiratory team, especially before putting your child in a more upright position. You may need specialist advice from a SALT (Speech and Language Therapist) for safe positioning for your child when feeding.

• If your child is lying on their side, it is important to check that their arm and shoulder aren’t trapped and that their ear is flat. You may find that a rolled-up blanket against your child’s back will help support them.

• As your child’s neck muscles are weak, a small neck roll, a rolled-up piece of muslin or a small facecloth may steady their neck and help with breathing.
• If your child is lying on their back and their legs tend to roll outwards, you may find it helps to use a small wedge or rolled up blanket on either side of their hips, or a small roll under their knees. You can also try using rolled up towels and soft toys as positioning aids. Again, your physio or OT can advise.
• Sometimes, for older infants, your physio / OT may advise a sleep system. This uses wedges and rolls (usually made of foam or fibre) to help your child maintain a straighter and more comfortable position while they are sleeping.

• If your child has a limited range of comfortable positions, look out for any red or sore ‘pressure’ areas on their skin. Early intervention is important, so if you have any concerns, contact your community children’s nurse or health visitor as soon as possible for advice.
• As your child gets older, they will want to see more of what’s going on around them. If your child struggles to change position, they will need help to do this. Changing position can also help relieve any pressure and can reduce stiffness in their joints.
• If your child is developing tightening of their muscles or joints (contractures) and discomfort, your OT or physio can advise and may provide foot / knee / hand splints to help with this.

SMA weakens the muscles which support the spine, and without this support, the spine can be pulled by gravity, and curve. When the spine starts starts to curve sideways into a ‘C’ or an ‘S’ shape, it is called a scoliosis. When the spine bends forward 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, and suggest any interventions based on their individual needs and situation. If your 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.

Your OT or physio can assess your child’s seating needs and provide advice on seating, including bath seats, which offer appropriate support for your child. Your OT or physio may also see if your baby would be comfortable in a seat that will give a lot of support when s/he is semi-upright. If this works for your child, you may find it is easier for them to play.

Why breathing (respiratory) difficulties are common for infants who have SMA Type 1

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, coughing requires strong muscles to be able to clear secretions.

Weak breathing muscles are common for infants with SMA Type 1 who are unable to sit. This results in breathing difficulties which are a leading cause of health problems. The main challenges for children are that:

• This 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.

Regular respiratory check-ups

The 2017 Standards of Care (SoC) advise that all infants with SMA who aren’t able to sit should have a physical examination in clinic as soon as possible after diagnosis. This should then be repeated regularly, at least after 3 months and then at least every 6 months. Your child should also have regular ‘sleep studies’ so that their overnight breathing can be tested. If a sleep study is done in a 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 at 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. ‘Sleep disordered breathing’ for infants who have SMA Type 1 often doesn’t show with just a sleep study alone as it is more complex. Your child’s team will explain if any other observations or assessments are needed.

Possible options for managing breathing

The options you may learn about, and use, will depend on your child’s individual breathing support needs. They 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 what is best for your child and may be trained and supported to do chest physiotherapy yourself.
• Medications (such as glycopyrrolate) that can reduce the volume of your child’s secretions and / or saliva may be prescribed. These must be used carefully as too high a dose can dry out the secretions too much, which then makes them harder to remove. Your medical team will monitor and change the dose as needed. Again, your child’s team will talk to you about this.

• Different types of nebuliser may be given to help your child. This can be to help loosen secretions or it might be in the form of an antibiotic. Your child will breathe in the medication as a fine mist, through a mask or a mouthpiece. If a nebuliser is needed, your child’s team will talk to you about when to use it and with which medication.
• A suction machine to help remove your child’s excess secretions and / or saliva. Your physiotherapist or another member of your medical team will talk to you about when and how to do this.
• Cough assist is the name often given to a mechanical insufflator – exsufflator machine. This helps to clear secretions from your child’s lungs. Your respiratory specialist will assess if it would be helpful for your child.

• Antibiotics may need to be prescribed quickly for your child when 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).
• Non-invasive ventilation (NIV) uses 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 breath 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, when and why your child may benefit from starting to use NIV.

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

• Oxygen isn’t used regularly, but your respiratory specialist will be able to advise you if / when your child should use it.
• Short term invasive ventilation may be used if your child has a medical emergency. This is when a flexible plastic tube (endotracheal tube) is passed through the mouth or nose into the windpipe.
• Tracheostomy may be considered for some children when NIV doesn’t work. This is surgery that creates an opening in the windpipe to allow breathing through a tube rather than the mouth. This would be long-term and a big step that doesn’t suit everyone. If this is something that might need to be considered for your child, early discussions with your clinical team about this would be helpful, while your child is well and before any episode of acute ill health.
• Pain relief – though not commonly needed now children receive drug treatments for SMA, this may be advised for any child in pain or distress because of their breathing.

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.

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

Due to their muscle weakness, your child’s suck may be weak, or it may be hard for them to chew or open their mouth, resulting in difficulties with feeding and swallowing. Food may get stuck in your child’s cheeks (sometimes called pocketing). Safe swallowing is one of the most important aspects of care as children with a weak swallow are at risk of inhaling (aspirating) their feed which can cause choking and chest (respiratory) infections, as well as more serious consequences like difficulty in breathing.

Support from Healthcare Professionals

There are a number of healthcare professionals who will give you advice and support on feeding, swallowing and nutrition. These include your health visitor, consultant, SALT (speech and language therapist), dietitian and community nurse. OTs (occupational therapists) and physios (physiotherapists) may also advise you on positioning and seating to help with feeding.

Regular Checks

The 2017 Standards of Care (SoC) recommend that all children who are unable to sit should have a swallow study shortly after diagnosis and again if they show other signs of difficulties. The test most often used to find out what is going on during swallowing is a Video Fluoroscopic Swallow Study which uses a type of x-ray. You will also be asked if your child has been bringing back up what they have swallowed (gastroesophageal reflux), had difficulties passing their bowel motions (constipation), or been sick (vomiting).

The SoC also recommend that a dietician reviews feeding and diet every 3 – 6 months for younger children and annually for older children.

Possible Options for How to Give Food

If your child’s swallowing is unsafe, or they are not gaining enough weight, your clinical team may suggest alternative ways to feed your child.

You should be given time to discuss and ask questions about the reasons for any of the following suggestions so that you understand the possible benefits and risks for your child. Also, if you child does need any of these options, you will be provided with training and support to enable you to feed your child safely at home.

Short-term options may include giving 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 is:

• Gastrostomy (PEG) tube – placed in the stomach via a surgical procedure and also called a PEG – percutaneous endoscopic gastrostomy. Another procedure called a Nissen Fundoplication, which helps to reduce any reflux, may be done at the same time.

Guidance for Diet

A dietician should work out what calories your child needs. SMA-specific growth charts aren’t available yet, so this may be based on standard growth charts for children, but your dietician will also take account of other individual measurements for your child. Their diet will be adjusted so that they are getting the right calories, fluids and macro and micronutrients – especially calcium and Vitamin D which are needed for bone health. You will also be advised how often to give your child food.

It is very important that your child has plenty of fluids, especially if they are unwell. You will be advised about correct amounts and how often. If your child is acutely unwell, experts suggest they should never go without food for longer than six hours.

Your child is quite likely to become constipated due to their muscle weakness and not being able to move around. This can cause discomfort and reduce the movement of the diaphragm, which in turn restricts breathing. You will be advised what medications to use to help this.

There is an increasing awareness of the importance of and interest in the development of these skills in children who have SMA Type 1.

In October 2023, we recorded a webinar with Giovanni Baranello (Consultant Neurologist at GOSH) and Alison Felton (Speech & Language Therapist at Alder Hey) on this topic. They cover research, developmental signs, communication aids and recommended strategies that may be needed to help, and how local and specialist teams can provide support.

Alison also suggested a number of useful resources which we have listed in the Support and Resources section below.

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. 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.

You should have the support and guidance of a specialist neuromuscular physio, familiar with the impact of SMA Type 1, who will be able to give you advice on simple exercises to support your child’s development. This includes specific stretching techniques to help prevent your child getting stiff muscles and tight joints (contractures). To make these fun, you can try these to music or songs. Moving will help to maintain and develop a range of movement in your child’s joints and is also good for their circulation.

Your physio may suggest exercises when in the bath, swimming or hydrotherapy pool as children often enjoy the additional freedom of movement provided by water. It is best not to take your child into a non-warm pool before they are six months old as they may have trouble regulating their temperature. Speak to your child’s clinical team about your local facilities and what might be suitable for your child.

You should also encourage your child to make movements themselves. For example, if you position toys carefully and your child is comfortable, encourage them to try reaching out. If your child is six months old or more, and is safe and comfortable lying on their side, they may be able to bring their hands together more easily and pass toys between them to play. Your physio may also show you how to use slings to encourage active movement without gravity.

It will help if you have a bath support for your child so that you can have your hands free for washing and playing. Your OT will advise you which one is best for you and your child. You might also find it helpful to have a towel laid out ready with a head roll for after the bath, to help with keeping your child well supported while you are drying them.

Though fun, bath time can also be tiring for your child. If s/he gets upset after bath time you may need to keep it brief and follow it with a nap. It is also probably best to feed your child after bath time rather than before as they might not be comfortable being handled so much when they have a full tummy.

It is recommended that all babies sleep in their parents’ bedroom for the first six months. You may need to do this for longer so that you can check on your child regularly and if needed reposition them so that they do not get stiff and uncomfortable during the night.

It is best to have a room that isn’t dry or stuffy or too warm, as this can make your child’s secretions become sticky and difficult to remove.

It is usually best for your child to sleep on a baby mattress as these are more comfortable than an adult mattress. There are also specialist mattresses available for babies and young children made of memory foam which mould to the body. Some parents have found these helpful for their child with SMA. Sleep systems (wedges and rolls usually made of foam and fibre) may sometimes be provided to support your baby’s limbs in a comfortable position at night-time. Your OT and / or community nurse will be able to provide you with more information on sleep systems and suitable mattresses.

It can help to have plenty of mattress covers, bedding and facecloths so that you can change and wash them when they get damp. Several thin, light covers on top of your baby are useful so that you can add or remove a layer if your child gets cold or hot.

It is  good to have some air circulation in the room but avoid any draughts. If you have any questions or concerns speak to your community nurse.

It is important that you get rest and sleep. If your child needs a lot of help overnight, your local health services may be able to provide some night care to give you a break – ask your health visitor, paediatrician or community nurse.

As mentioned before, SMA can make children very sweaty with flushed faces and hot or cold hands. This can make it difficult to judge if their temperature is OK. If you aren’t sure, it is worth checking with a small digital thermometer that you can hold under your child’s armpit, or one you can put in their ear – you can buy these from any chemist.

Changing clothing isn’t easy with any small baby, but especially if your child is weak, tired or uncomfortable. You can avoid having to lie your child on their tummy when changing them if they have front fastening clothes.

When they are little, it is worth choosing roomy vests, baby grows or onesies that have large neck-openings which make them easier to get on and off and that are loose enough not to dig into your child’s skin. Watch out for tight cuffs or feet that are too small and will cramp toes.

You may find that baby / small sleeping bags, which are warm but loose and roomy, are also useful when you are out and about.

As you child grows you may find it worth taking a look at what clothing ranges are out there that might make changing easier. You can find some suggestions of where to look on the Bathroom, Toilet, Clothing tab on this page.

How you do this and what equipment you need will very much depend on your situation and your child’s health, stage of development and motor abilities.

This section outlines some possibilities for getting out and about and where you can find more information about the best option for your child. You aren’t alone though, if you find this challenging to sort out; many families find it difficult to find a suitable car seat, buggy or restraint that will provide safe, supportive and comfortable positioning for car travel. For example: your child may find it hard to tolerate travelling for a long time and may get hot and sweaty; some children need equipment to help their breathing when they travel and / or a portable suction machine; some need a carer beside them to monitor how they are. Your key advisers about how to meet your child’s individual needs are their physio, OT and respiratory team. 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.

Buggies

Your child may need a supportive, lie-flat buggy. Some children need to have their suction machine and other equipment with them so a buggy that has a strong and stable carrying basket or storage tray can be useful. It is essential that you always take with you any equipment advised by your respiratory team. Your OT or physio should be able to help you find out about a make and model of buggy that will work well for you and your child. SMA UK can also let you know what models have worked well for other parents.

Wizzybug and Bugzi

Wizzybug and Bugzi are powered wheelchairs for children under the age of 5 years that allow a child independent mobility and may in due course be recommended for your child. They can be used indoors (and in some outdoor situations) and are easy to control, so can sometimes be suitable for children as young as 14 months. You can ask your OT or physio if either of these would work for your child.

Car travel

If your child has respiratory needs (i.e. regular suctioning / ventilation / cough assist) it is essential that you always take with you any equipment advised by your respiratory team and are able to use it when needed. A risk assessment should be discussed with your child’s respiratory team. This may include, for example, requiring an adult to be in the back with the child, the child being on non-invasive ventilation (NIV) or oxygen saturation (SpO2) monitoring while travelling.

If your child isn’t able to sit, they are likely to need a rear-facing car seat and possibly additional head support. They may be able to use a standard car seat, but this may be too upright for them. Ask your physio or OT to check your car seat has suitable recline /lie flat options and enough support for your child including for their neck and head. Weaker children should have a ‘car seat challenge’ carried out by the physio / OT to check that travel is safe. A car seat challenge is an observational assessment to ensure that your child’s breathing is safe in a car seat. This is done by monitoring your child’s breathing pattern, oxygen saturation levels, heart rate and in particular looking for signs of respiratory distress when they are in a particular car seat. This may be completed / considered as part of the risk assessment described above.

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.

If your child needs to lie flat to travel, but cannot use a car seat safely and comfortably, a possible option might be an E-Z-On Harness which enables a child to be strapped in whilst lying flat along the length of the back seat of a car. Talk to your physio or OT.

Another alternative to a car seat if your child is older and has to lie flat, is to secure a specialist lie-flat buggy in a wheelchair accessible vehicle (WAV). Your physio or OT may be able to advise you on a suitable buggy that has been crash tested for travel when secured in a reclined position. Sometimes they are available through wheelchair services.

• WAVs can 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.
• For families whose 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 their individual mobility requirements.
• Some parents purchase their own vehicle. Others secure their buggy in an accessible taxi.

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 medical 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 these pages of the GOV.UK site.

Palliative care services vary across the UK and may be provided by a number of different healthcare professionals in a variety of settings including hospitals, children’s hospices and at home. If involved, they work as a team aiming to actively support the physical, emotional and practical needs of your child and family.

Palliative care is often associated with end-of-life care. Though this is one aspect, unless needed it is not a focus for these services which provide support and respite to families at any stage of a child’s life. Services offered may include children’s hospices which support families, both practically and emotionally. As well as offering nursing care, they provide a range of services that may include physiotherapy, complementary therapies and play and music therapy. They can support a family to make decisions about their baby’s ongoing care and wishes for their child’s future care should they become very unwell. Your child’s consultant, care advisor or specialist nurse can advise you about services available in your area.

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.

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

The emotional impact of a diagnosis of SMA Type 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 Baby’s Diagnosis of Spinal Muscular Atrophy’ talks about the impact of this and what support is available.

The Family and Friends / Challenges and Support pages 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.

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

Resources to support the development of cognition & communication:

• When do Babies Start Talking? >
• Child’s Progress Checker >
• Signs & Symptoms >
• Other Ways of Speaking >
• Enabling Better Lives for People with communication & swallowing needs >
• Augmentative & Alternative Communication >

SMA UK

Phone: 01789 267 520
Email: office@smauk.org.uk
Website: www.smauk.org.uk

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.

Multisensory toy packs are available free of charge for infants in the UK who are under 12 months of age and diagnosed with SMA.

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 Services 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.

Drug Treatments for Children in England who have SMA is our guide 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 to people in the devolved nations.

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.

Contact for Families with Disabled Children

Phone: 0808 808 3555
Website: www.contact.org.uk

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

Muscular Dystrophy UK

Phone: 0800 652 6352
Website: www.musculardystrophyuk.org

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

Children’s hospices

Located throughout the UK, these also offer a wide range of services and support to eligible children and families; some also offer short breaks. Details of hospice services are available from Together for Short Lives and more information is available on their website.