Living with SMA

Spinal muscular atrophy (SMA) is an autosomal recessive neurodegenerative disease. It is characterized by progressive muscle weakness, caused by the loss of specialized nerve cells — called motor neurons — in the spinal cord and the part of the brain connected to the spinal cord.

The loss of motor neurons leads to weakness and atrophy of the muscles most used during daily activities, like crawling, walking, sitting up or controlling head movements. Muscles used for breathing and swallowing can also be affected in SMA.

As a result, living with SMA can affect the life of patients and their families in many different ways, from nutrition to travel, and they may need specialized equipment to support them along the way.


Proper nutrition is complex, especially for children with SMA. With no studies supporting one specific type of diet, the best method is to stay informed about nutrition and make decisions based on specific needs.


Traveling can be a challenge for people with SMA and their families, and good planning is essential to make things easier.

Specialized equipment

People living with SMA many need to use specialized equipment to help them in their daily lives. Find out more about various types of equipment such as:

  • Adaptive strollers and wheelchairs

Adaptive strollers (also known as medical strollers) are built for children with special needs. These strollers usually come with accessories that allow a child to be supported and positioned comfortably. Some strollers have special trays to carry medical equipment as well.

  • Carbeds and E-Z-ON modified vests

Car beds are car seats that lie flat and that allow the child to travel safely and comfortably in the prone position. For babies with SMA type 1, these car beds are vital because they might experience apnea and oxygen desaturation if they are placed in regular car seat. E-Z-ON modified vests are used for transporting children with SMA type 1 once they outgrow car beds. This modified vest can be integrated into the back seat of the car, allowing the child to lay flat across the back seat while traveling.

  • Braces and standers

Three different types of braces are generally used by SMA patients: ankle-foot orthoses (AFOs), which are designed to control the position and motion of the ankle to compensate for weakness or to correct deformities; knee-ankle-foot orthoses (KAFOs), which are designed to provide support and proper joint alignment to the knee, foot and ankle; and thoraco-lumbo-sacral orthosis (TLSO), which are back braces that wrap around the arms and rib cage, lower back, and hips to cast the spine into a straighter position. Standers are meant to help with digestion, circulation, and breathing. They also promote bone strength as patients bear weight on their legs.

  • Equipment for domestic use: bath chairs and feeder seats

Bath chairs allow children and small adults with special needs to bathe safely and comfortably. They are generally adjustable, with multiple seat and back angles. Feeder seats are soft foam positioning seats, designed for all ages that provide an alternative to a wheelchair or a stander.

  • BiPAP machine

The BiPAP machine delivers air through a mask over the nose, over the nose and mouth, or through a tube. The machine provides higher pressure and an increased volume of air when a patient inhales. The machine can intuitively sense a patient’s breathing cycle and adjust to it. BiPAP machines are not the same as continuous positive airway pressure (CPAP).

  • Cough assist

A cough machine forces air into the lungs at a predefined pressure and then sucks the air out of the lungs. This action can help produce a more effective cough to maintain airway clearance.

  • Pulse oximeter

A pulse oximeter is used for checking blood oxygen levels. The oximeter alerts caregivers to problems or if the patient needs help with coughing.

SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.