As Ruby Borges walks her nine-year-old son Dylan in and out of the intensive care unit (ICU), she watches his condition steadily deteriorate. Yet, she continues to pin her hopes on the state government’s promise of support.
Unfulfilled Promise of Free Medication
In 2024, the Goa Medical College (GMC) identified Dylan and three other children, all under the age of 10, as eligible to receive costly spinal muscular atrophy (SMA) medication free of cost. However, the government’s commitment has not yet materialised. Earlier this week, Health Minister Vishwajit Rane announced the rollout of an innovative pricing policy for cancer and rare disease therapies. Families of children with SMA now wait anxiously for concrete action.
Crowdfunding for a Chance at Life
Dylan last received his medication three years ago after his mother launched a crowdfunding campaign. She went door-to-door across Goa, appealing for help. Friends and family amplified her plea on social media, and by 2021 she had collected around ₹45 lakh. The pharmaceutical company offered a buy-one-get-one-free bottle of the medication, which lasted only a year.
Signs of Hope, Followed by Decline
As reported by TOI, the treatment brought remarkable improvement between 2021 and 2022. “He was able to sit without support, keep his neck up straight, and hold a glass in his hand,” Borges recalled. His progress even prompted his special school teacher to recommend shifting him to a regular school. Today, Dylan studies in Class III, but his body no longer supports his enthusiasm for learning.
Once the medication stopped, his muscles weakened again. Borges said, “Now he gets pneumonia at least twice a year, and we spend days together in the ICU. He loves going to school, but his hand pains when he writes, and he has lost the strength to sit comfortably in his wheelchair.”
Support from Palliative Care Organisations
Dylan attends physiotherapy and recreational therapy sessions at Novi Survat’s Sangolda centre. The organisation provides palliative care for children with life-limiting conditions, aiming to improve their quality of life. In 2023, Novi Survat established the SMA Care Group in Goa. Within a month, five children registered. By mid-2023, parents had formally created a support group to share experiences and offer encouragement.
Urgent Call for State Support
Novi Survat’s director, Dr Philomena D’Souza, has been consistently advocating for government-funded access to Risdiplam, the life-saving SMA drug. “We can see these children’s muscles withering away. Their bones are thin, and they are in and out of hospital with frequent ICU admissions. Their muscle tone is fading, and their power is diminishing. Something urgently needs to be done for them,” she said.