Spinal Muscular Atrophy (SMA) is a life-threatening, rare, progressive, genetic disorder that affects the motor neurons in the spinal cord, resulting in muscle weakness and progressive loss of movement. Without timely intervention, most children with SMA do not survive beyond their second birthday and some remain confined to wheelchairs. However, it is not just the patients, the family and the caregiver network too undergo several stressful events and have a journey filled with financial and emotional struggles.
Challenges faced by caregivers
The path of caregivers for children with Spinal Muscular Atrophy (SMA) is a challenging one, fraught with physical, emotional, and monetary hardships along with social stigma, inaccessibility, and lack of inclusion faced by the children with SMA in educational institutes and other social circles. Within the realm of caring for children with Spinal Muscular Atrophy (SMA), caregivers face numerous challenges stemming from a lack of awareness and knowledge about the condition. Many parents are oblivious to the existence of SMA or the importance of antenatal and prenatal screening. This lack of understanding plunges families into emotional turmoil upon receiving the diagnosis. Caregiving is extremely taxing on parents in terms of time, effort and learning medical terminologies and care.