Children Living with SMA – Holidays
Children Living with SMA – Holidays
Last checked: July 2026
Accessible accommodation:
Ask about:
- Steps
- Gradients
- Widths of doorways into bedrooms, bathrooms and any other areas such as dining rooms and bars.
Equipment:
- You may need:
- a portable hoist and sling
- a shower chair
- a voltage changer if going overseas – see Tab 2. Taking Your Child’s Wheelchair below
- What’s available onsite – especially in the bathroom?
- If something you need isn’t available, can it be hired? Or will you need to bring it with you e.g. a portable hoist
These organisations also offer advice and hire equipment. There may be others as well:
National Mobility Hire > – for children’s lightweight wheelchairs as well as mobility aids for adults.
British Red Cross > – to borrow or hire a wheelchair – age 5 years upwards.
Community Tip:
A baby or child carrier that gives good support could be helpful if you:
- need to give up your pushchair at the airport
- want to go walking in places that aren’t easily accessible
- have your hands free
Rose and Rebellion’s child carriers > can be folded completely flat and small for storage. It is just fabric.
Freeloader’s child carrier > is another option.
There may be more options on the market. Always consult your child’s physio about which one would be best for your child and suit your travel needs.
Transport:
- If you’re driving, are there suitable parking facilities?
- If you’re not taking your own vehicle and need accessible transport, what’s available?
- Can you hire Wheelchair Accessible Vehicles (WAV) or taxis?
Medical Care
What services are nearby?
Take:
- Details of any medications or treatments,
- Your child’s Emergency Health Care Plan and our information sheet for hospital staff >.
- Contact details for healthcare professionals supporting your child.
If you’re going abroad, do you need to take a translation with you?
If your child uses a powered wheelchair, a lighter wheelchair option may not be possible or preferred. If so, to minimise the risk of a breakdown, you might want to have their wheelchair checked before you go.
If you’re travelling within the UK and your NHS wheelchair breaks down, the local wheelchair service repairs may be able to help.
If you are going overseas:
- Don’t forget to take the charger and an adapter suitable for the country you’re going to. If the voltage is different, you may also need a voltage changer. Check with the wheelchair manual or ask your supplier or manufacturer.
- Find out in advance if there’s anywhere to get the wheelchair serviced should something happen during the trip.
If travelling by air:
- Check with the airline about transporting a wheelchair.
- See if travel or home insurance covers the wheelchair or any other equipment being taken on holiday. Please see the section below on insurance.
- See Tab 2 Plane Travel > for further information.
Sheffield Children’s NHS Foundation Trust has published ‘Travelling Abroad with a Ventilator >’ a guide for families. They recommend that it’s important to plan in advance, especially if your child needs to use either oxygen or ventilation on the aeroplane or at any resort. They advise that the information they give should be used as a guide, and won’t apply to all children in all circumstances.
Depending on your child’s circumstances, we know it can be quite difficult to get insurance and sometimes very expensive (£1000+). Also, it seems to depend on whether you are staying in Europe or not.
The UK Global Health Insurance Card (GHIC) > lets you get state healthcare in Europe at a reduced cost or sometimes for free.
Travel insurance agencies are likely to ask three questions about your child before providing a quote:
- Do they have swallowing challenges?
- Do they have respiratory challenges?
- Have they had any unplanned hospital admission within the last twelve months?
Families and health professionals tell us that insurance companies often seem to overlook how treatment affects the health and development of children with SMA Type 1. This could be one reason why quotes can vary greatly and why some refuse cover. It’s best to call the insurers instead of filling out quotes online. This will allow you to discuss your child’s specific situation.
Families have told us that insurance costs also seem to vary depending on how you’re travelling. For example, if you’re on a cruise, because of the onboard medical assistance if this is needed.
When you’re sorting out your travel insurance, you might also want to make sure that:
- Any carers or personal assistants going with you are covered.
- You’re covered for cancellations and loss or damage of property, including any equipment.
- Equipment can sometimes be covered through home or equipment insurance.
Whatever cover you have, check if equipment insurance would cover the cost of hiring alternative equipment. If you’re flying, contact the airline in advance and request a ‘special declaration of interest’ for any equipment insured. This will ensure that no limit can be put on an equipment insurance pay out if equipment is damaged by the airline.
Some families within our SMA Community have found insurance with these companies. It’s quite a list to work through, but hopefully it will narrow down your search:
You can find other helpful guides to insurance at:
Accessible England > Visit England provides information on accessible toilets, accommodation and guidance on planning your trip.
Tourism for All > – helps disabled people plan and take holidays and breaks – both in the UK and overseas.
CanalAbility > – a charity offering accessible canal boat holidays and day trips.
Sandcastle Trust > – offers bespoke family respite, wrap around fun family engagement activities and peer support to support families living with a rare genetic condition (based on their individual needs) from across the UK.
For accessible facilities in Wales and Scotland, you might want to start with these websites:
Active8 > – a Cornwall-based youth group supporting young people age 14 – 30 with any type of physical disability and no impactful learning disability. Their projects offer fun new experiences… from screen printing, ceramics, zipwire, cooking, sailing, horse riding, GoKarting, Quad Biking…
Avon Tyrrell > – inclusive weekends for families as well as other opportunities at their fully accessible centre in the New Forest National Park:
Bendrigg Trust > – inclusive family weekends for families and other opportunities at their activity centre in Cumbria.
Calvert Trust – a wide range of inclusive family activities at centres in Kielder > and the Lake District >.
Mersea Island Annual Festival > brings together children, young people and adults with or without a physical or learning disability. The Festival provides an opportunity to try out new activities.
Phab Adventures > – inclusive day and residential adventures for children, young people, adults and families.
Sandcastle Trust >– offers bespoke family respite (including accessible adventure breaks), wrap around fun family engagement activities and peer support to support families living with a rare genetic condition (based on their individual needs) from across the UK.
Gov.UK guide on foreign travel for disabled people > – useful tips and links.
These organisations have been recommended to us, many others are available:
Association of British Travel Agents (ABTA) > – guidance on how to work with your travel provider to book holidays that meet your needs. Also information about your legal rights.
A Wheel and Away > – for the independent traveller, who may be disabled, but who still dreams of seeing the world under their own steam. It provides a forum for people to share experiences, inspire others and discover how to go about creating amazing adventures.
Disability Horizons > –travel and holidays
Tourism for All > – helps disabled people plan and take holidays and breaks – both in the UK and overseas. You have to be a member to access this service – annual subscription of £25.00 for UK residents. Membership entitles you to use the information service as many times as you like during the year.
The Family Fund > – may make a grant towards holiday costs with or without your child.
The Family Holiday Charity > – may provide funding for a one-week holiday in the UK. Applications should be made between October and November for the following year as funds tend to be spent by March.
REACT (holiday homes) > – families with a child with a potentially life threatening illness may apply for a week’s holiday at one of their mobile homes around the UK
See also: Tab 9 Wish Granting Charities below.
This section lists some of the charities which offer to fund ‘wishes’ for children who are very ill or disabled. Most will only accept one wish for a child provided they have not already had a wish granted by another charity.
Make a Wish Foundation > – Phone 01276 405060 – for children age 3 – 17 years (inclusive). Eligible children include those with a genetic condition that can lead to a reduction in life expectancy or can be associated with life threatening complications. Referrals may be made by the child’s health, social care or education professional.
Promise Dreams > – Phone: 01902 212451 – for children from birth to age 18 terminally and seriously ill children including those who have, ‘a confirmed diagnosis of a degenerative life limiting condition such as Duchenne Muscular Dystrophy or Spinal Muscular Atrophy’.
Rays of Sunshine > – Phone: 0208 782 1171 – for children ages of 3-18 years who have serious or life-limiting illnesses.
Round Table Children’s Wish > – Phone: 01202 514515 – for children aged 4 – 17 years with a life-threatening illness. Applicants are advised to phone the Wish Coordinator first for a discussion.
The Dream Factory > – Phone: 0208 501 1234 – for children age 3 – 25 years who have life-limiting or life-threatening conditions and / or severe disabilities. Applicants should phone or email: info@yourdreamfactory.org
When You Wish Upon a Star > – for children age 2 – 16 years living with a terminal or life-threatening illness.
Access at Last > – accessible accommodation Europe and the USA.
Airbnb > – worldwide accessible accommodation (use search filters)
A Wheel and Away > – for the independent traveller, who may be disabled, but still dreams of seeing the world under their own steam. It provides a forum for people to share experiences, inspire others and discover how to go about creating amazing adventures.
Ceiling Hoist users Community (CHuC) > – lists accommodation in the UK and overseas that has ceiling hoists:
Disabled Holidays > – worldwide
Enable Holidays > – worldwide
Matching Houses > – house swaps for families with disabled children
Responsible Travel > – Accessible Holidays Guide, worldwide