Rebecca Bulman’s five-year-old son Harry, from Youghal, cannot walk and uses an electric wheelchair.
She said he is now in school and also attends Enable Ireland regularly for therapy.
He finds it difficult to write because his hands are weak because of the condition. He was diagnosed at 18 months.
SMA reduces a person’s physical strength by affecting the motor nerve cells in the spinal cord. This can affected a person’s ability to walk, eat or breathe.
Rebecca said: “He also cannot put up weight and he keeps getting chest infections.”
She added that he recently picked up a cold which lasted for two months because he could not fight it off.
Rebecca and other families are now lobbying the government and Health Service Executive for approval for a new drug called Spinraza. The drug has been approved in other countries and has been attributed to improvements by sufferers of SMA.
Rebecca said a decision was due this month on whether the drug will be approved in Ireland. But she is concerned that issues including the overspend on the new children’s hospital, and the strike by nurses, will result in a delay in making a decision.
She said members of the public can help families like hers by logging onto the SMA Ireland website and emailing TDs through it, asking for approval to be granted for Spinraza.