Below are the various expenses related to the management of spinal muscular atrophy (SMA), which can greatly strain a family’s finances.

In this study, the foremost issue was the lack of independence and mobility. In particular, this was a critical milestone for patients with SMA type 3 as they transitioned from being independently mobile to becoming wheelchair-bound. On the other hand, wheelchairs are a part of life for those with SMA type 2, who are usually adept at utilising powered or electric wheelchairs. However, all face difficulty travelling independently or navigating their environment due to sub-optimal infrastructure and public amenities that are inaccessible to wheelchairs.

There is need for a support system at each stage of SMA as many parents have painfully shared the mental torment, anger, stress, depression and anxiety they go through at each stage of the disease. This includes dealing with the shock and grief that comes with the diagnosis and prognosis, the mental burdens of caring for their child and the grief when the child passes away.