SMA Warriors
Saluting the formidable spirit of SMA Warriors
"I decided that a disease cannot define who I am. There was so much to be done, so many unfulfilled dreams to be achieved. The path was not easy to say the least, but like they say…when the going gets tough, the tough gets going."
“I want to be treated like any other child in my school. I am grateful to my family, teachers, doctors and friends who've supported me every step of the way. With the right treatment, I am able to fight SMA every day and pursue my dreams of coding, making mobile applications, be in my school's annual function and participate in many Math and Science Olympiads.”
“We are so glad and thankful to see our daughter Revati achieving small yet significant milestones everyday. It fills our hearts with joy to see her take little steps, climb stairs slowly yet steadily and be able to kick a football. For a parent of an SMA child, reaching these milestones are extraordinary.”
"I had delayed development milestones when I was two years old. A muscle biopsy & EMG studies were performed. But a conclusive genetic diagnosis was established only when I was 14 years old, and by that time my condition had worsened. This emphasizes the importance of an early diagnosis in effectively treating and managing SMA. The availability of an SMA treatment in India with a multidisciplinary approach will ensure that people with SMA may experience better treatment outcomes. This truly brings hope to the entire SMA community in India."
"SMA does not confine my dreams, ambitions or interests. Love and care from my family and friends, and treatment for SMA has allowed me to live life to the fullest."
“Availability of SMA treatment is a ray of hope for patients and their families. We are delighted that the long standing battle of accessibility and availability of the SMA treatment has come to an end.”
“Throughout their lives, many people with SMA may lose their ability to perform critical movements, which can impact their ability to independently participate in different aspects of daily life and even be life altering. SMA patients in India have long lived without a viable treatment option. We are today encouraged by the availability of SMA treatment in India.”
“The launch of an SMA treatment in India is an eagerly awaited milestone for our community. We are thankful for making the SMA treatment available in India.”
“Being a parent of an SMA child can be emotionally, physically and financially draining. There have been times when we thought we had lost our son to this disease. But with SMA treatments, coupled with a multidisciplinary approach, and quality care we have seen significant improvements in his health. We have waited for a long time for a SMA solution to be available in India. The availability of an approved SMA treatment in India has answered the prayers of the SMA community. Lastly, the fight against SMA does not end with just treatment availability. It needs a holistic approach that includes government support, inclusion of SMA in health insurance schemes, sustenance of crowdfunding platforms and constant efforts towards raising public awareness about this life altering disease.”
"The community in India has lived for decades without a glimmer of hope. With the availability of SMA treatment in India, families now have an option for treatment. SMA treatment has the power of changing the entire landscape for the rare disease community in India. The new chapter in the lives of SMA patients and their families has finally begun!”
"I’ve seen the benefits in my own Type 1 SMA daughter; where she was weak and waning in strength, today she is healthy and active with proper medical care. I truly hope that everyone will soon have access to SMA treatments and quality care."
“There are very few people in the world who can understand the life and suffering of a SMA patient. We are thankful and indebted for now having access to life saving SMA treatment, which was a dream for us at some point of time. An appropriate SMA treatment along with a multidisciplinary approach, and quality care has brought in a lot of improvements in my child.”
