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Q: How long will my child survive?

A: SMA type 1 is an extremely severe form of the disease. Most children with SMA type 1 die before their second birthday.

People with SMA type 2 live into early adulthood and, with proper care, many are living well into adulthood.

The lifespan of people with type 3 is the same as the rest of the population.

In SMA type 4, life expectancy is not affected, and those with this condition are able to walk unaided until age 60.

Q: Will they get better over time?

A: Due to the progressive nature of SMA and the unavailability of it's treaments (Spinraza and Zolgensma) in India, it is very difficult for the patients to get better over time. However, we at Cure SMA India are developing SMA management protocols and best practices that can improve the quality of life and delay its progression to some extent. For details, please contact our team.

Q: What equipment will the child need?

A: Depending on the child's level it can range from standing frame, walker, manual wheelchair, power wheelchair, Spinal Braces, AFO’s etc

Q: Is there any therapy?

A: Spinraza and Zolgensma are the two drugs approved by USFDA for the treatment of spinal muscular atrophy. However, they are currently inaccessible in India. A combination of Physiotherapy , Hydrotherapy and Occupational Therapy can do wonders in overall quality of life of sma patients

Q: Has my child got an intellectual disability?

A: SMA does not cause intellectual disability as the brain is not a muscle. There for your child’s intelligence is unaffected. Like all children they will thrive for information.

Q: My child is tired all the time is this normal?

A: The Child’s body and muscles are working twice as hard as other children therefore they will tire easy. It may be easier to schedule appointments or activities in the morning when you know they have had good rest before hand (like an overnight sleep).

Q: Can my child go to mainstream school?

A: There is no reason for your child not to be mainstreamed. Talk to your local school about the different ways they can provide an accessible education for your child. Many SMA children are high achievers

Q: What will we need to do around the home?

A: Modifications such as lifters ramps, toilet grab rails talk to OT and Physio about what is best for your child.