Spinal muscular atrophy

What is spinal muscular atrophy?
Spinal muscular atrophy, or SMA, is a neuromuscular condition caused by a genetic mutation. There are four main types of SMA, and it is usually diagnosed soon after birth. SMA leads to weakness of the muscles, including the breathing and heart muscles, and therefore some children require specialist equipment to help with breathing.

Team BBP are absolutely thrilled with the new gene therapy treatment Zolgensma for SMA type 1, and – since it became available on the NHS – have been lucky enough to help five courageous superheroes in their treatment journey. In the short time since it launched, we have seen our determined superheros’ lives change from very early on in the treatment phase, and we are extremely happy for them and their families!

Watching a demonstration of the off-road Trekinetic wheelchair for adventures!

What does Physiotherapy Involve?
Physiotherapy for SMA is as varied as the children themselves! We see babies and children at all stages of their development, and their goals and treatment programme is specifically customised for them and their families’ needs. One of our clients worked hard at maintaining his upper arm strength during a period of deterioration, and this treatment helped him to dance in his wheelchair at a wedding!

Muscle Strength
Weakness is a huge part of the SMA diagnosis, and physiotherapy helps to maintain and protect the muscles from deterioration for as long as possible. This can be facilitated through specialist equipment, orthotics, tailored exercises and regular team work, with all professionals involved in the superhero’s wider care team.

Exercise therapist Aisha exploring how the Trekinetic moves around the office!

Independence and Movement
We are able to liaise and work with professionals such as wheelchair services, occupational therapists and NHS physiotherapists to recommend excellent postural management and independent mobility for our SMA superheroes. We make sure we spend time getting to know our clients and their families’ wishes. This helps immensely in prescribing the correct equipment. Some of our superheroes want equipment to look good and match their outfits! Some prefer off-roading capabilities with suspension and comfort for adventures, and others go for minimalist lightweight equipment to take into small spaces and pack up in the car or on public transport. We regularly research the latest equipment available, and have demonstrations at our team days to make sure we know the market, and what is available in addition the NHS provided equipment. Our latest demonstration in October 2021 was the Trekinetic wheelchair by Beyond the Boundaries. We had lots of fun trying out this wheelchair, and learning about clients who have taken it on the beach, hiking through the woods with their friends, and then packing it up in the car for the next adventure.

Function and participation
Everything we work hard for in our physiotherapy sessions goes towards bespoke goals that fit into our clients’ lifestyles. This could be anything from maintaining arm strength to brush hair, exploring assistive devices with occupational therapists, breathing exercises for lung expansion, or improving independence with early gross motor skills. We involve the superheroes’ interests and motivations in all stages of our treatment, and if they are too young to tell us, we have magic ways of finding out what makes our superheroes happy!

To find out how we can help your SMA superhero, contact us.