The COVID-19 lockdown had made it difficult for those with Spinal Muscular Atrophy to get their daily dose of sunlight and move out for physiotherapy sessions
Rustom Irani with his parents
The COVID-19 lockdown has been a very challenging phase for all those suffering from Spinal Muscular Atrophy (SMA) Type 2 – a disease that needs those affected by it to get their daily dose of sunlight due to Vitamin D deficiency, and physiotherapy sessions to survive. While moving out has been almost impossible amidst the pandemic, which has also brought about job losses and pay cuts, the parents of those fighting SMA have emerged as the unsung heroes of this difficult phase.
Andheri East resident Rustom Irani, 40, has been bound to the wheelchair for years now. His elderly parents Sheriar, 68, and Manijeh, 65, have been ensuring that their son receives sunlight daily and gets to do his physiotherapy at home. Speaking to mid-day, writer and filmmaker Rustom said, "I weigh more than 105 kgs and my elderly parents have to physically lift me up from my wheelchair and position me close to the window so that I receive sunlight. Also, for the past nine months they have been helping me with my physiotherapy at home."
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Alpana and Nishant Kumar with their son Aarav who is an SMA patient
"I used to spend anywhere around Rs 50,000 to Rs 75,000 (which includes medication, supplements, food, transport and physiotherapy sessions) to lead an active life. But I've had no income since the past couple of months," he added.
'Doing yoga daily'
He further said, "A lot of people have shared with me how being under a lockdown gave them a sense of what we go through in confinement. Financially it is quite tough as a creative person. I used to take part in video-shoots and attend events, which no longer is the case. I ensure that I do yoga regularly to keep my airways strong so that I can swallow food without getting choked." Rustom is one of the oldest living SMA patients in the country and has been actively involved in advocating the concerns of those affected by the disease and disabled children as well, through the CureSMA Foundation India chapter.
Zeba Gufran Farooquie with her sons Affan and Erhan
Zeba Gufran Farooquie, 28, a Dharavi resident, has two children – Affan and Erhan – and both are fighting SMA. "During the initial days of the pandemic, my biggest fear was of losing my children to either COVID-19 or SMA. I had completely restricted them from going out and even relatives were not allowed to come home. I would focus more on homemade food and snacks and avoid the packaged ones and those from outside," recalled Zeba.
"It was around that time when I got in touch with Alpana Sharma – founder of CureSMA India. She guided me and was a constant support. It is because of Alpana and the initiatives of CureSMA that my younger son got selected for a lifesaving treatment through a programme, which is a CSR initiative of a pharma company. It's high time that the government steps in to make the lifesaving treatment accessible for my other son and all the children suffering from SMA," she added.
Alpana Sharma, 38, a Kharghar resident, whose son Aarav, 8, is an SMA Type 2 patient, said, "There are more than 400 families with SMA patients from across the country, who have been badly hit by the pandemic. Given the vulnerable health of our children, it's like walking on a double-edged sword and thinking what would kill them first – COVID-19 or SMA?"
Weak respiratory systems
"Our kids are the most vulnerable now due to their weak respiratory systems. It's physically, emotionally and financially draining for us. I have to manage my son all by myself. This is affecting my health too. I suffered a slip disc recently and doctors suggested that I should not lift my son as it might damage my spine, but then I have to look after him. My husband is the sole breadwinner of the house and he needs to focus on his job," Alpana added.
She further said, "The CureSMA Foundation of India has a team of super specialist and expert doctors. With their help we have published the COVID-19 guidelines for those suffering from SMA. We have also established multidisciplinary SMA clinics in six major hospitals across the country. At CureSMA we support SMA families through our newly diagnosed care and counselling, resource pool, camps and supportive services. We have augmented our efforts to bring the lifesaving SMA therapies to India, however we need government intervention in this matter."
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