Kind donors continue to battle dreaded disease whose remedy costs crores

In a span of six days numerous good Samaritans from Kerala and across the world came together to raise Rs 18 crore in six days for 18monthold Muhammed Rafeek from Kerala who is suffering from Spinal Muscular Atrophy SMAtype 3 Muhammed hails from Matool village in Kannur district and needs the imported gene therapy lsquoZolgensmarsquo worth over Rs 16 croreThe movement to fund the treatment of children suffering from SMA was started by the parents of Teera Kamat from Mumbai Mihir and Priyanka Kamat too had successfully raised money for their daughterrsquos treatment The government had also exempted the gene therapy of taxes in Teerarsquos caseMuhammedrsquos elder sister a Std IX student Afrah too suffers from SMAtype 2 and is wheelchairbound because of the disease ldquoI want to see my brother walking I do not want him to be bound to the wheelchair like merdquo said Afrah 15 Afrahrsquos second sibling Anzila 7 luckily does not suffer from the diseaseMatool panchayat president Farisha AbidldquoI have been wheelchairbound for a few years I like to play with my siblings but at times get severe pain in my limbs and back I aim to become a civil engineer My family and I are thankful to the people who supported my brotherrsquos treatmentrdquo Afrah saidTreatments for SMADr Razeena cofounder and director of patient empowerment CureSMA in Kerala who is closely working with many SMA children said ldquoAfrah is suffering from SMA since she was two years old Her parents could not find a solution for the disease Today we have Spinraza an antisense oligonucleotide intrathecal injection that is given to the spinal cord It is however too costly In 2019 a new drug was developed by Novartis The gene therapy is a onetime infusion and replaces the SMN1 gene by using a vector AAv9 The infusion is recommended only up to two years of agerdquoMuhammedrsquos parents realised that he has SMA when he started facing difficulty in walking at the age of one ldquoThey consulted paediatric neurologists at Aster MIMS hospital and were told of the access programme managed by Novartis Muhammed has only four months left before he loses his eligibility for the treatmentrdquo Dr Razeena saidMuhammedrsquos parents Rafeek and Mareyumma centre with community members in their village Matool in KeralaldquoThey decided to go for a crowdfunding programme Afrahrsquos plea for her brother did wondersrdquo Dr Razeena saidlsquoMonitored son closelyrsquoRafeek employed as an air conditioner AC technician in Abu Dhabi for over two decades said that his motherinlaw Ummu Saudha was the biggest support in taking care of the children She died at the age of 64 a few months agoRafeek added ldquoWhen Muhammed started crawling I would ask my wife Mareyumma to monitor his movements closely During my last vacation I noticed that he was not climbing stairs nor walking like a normal child his age Doctors confirmed SMAtype 3 I did not want him to suffer too We discussed the matter with the village panchayat president Farisha Abid who formed a committee and made the crowdfunding possiblerdquoldquoWe will always pray for the wellbeing of each and every donor We appeal to the governments of Kerala and India to support SMA children The gene therapy should be made available in India with tax exemptions so that many more children can be savedrdquo said Rafeek who may return to Abu Dhabi after Muhammedrsquos treatmentTeamwork gave resultsPanchayat president Farisha told midday ldquoI was not sure if I would be able to do much but I decided to support the family in every possible way We formed a medical committee to help Muhammed In a monthrsquos time the committee prepared a plan and implemented it A letter was published in three languages mdash English Arabic and Malayalam to reach out to people A video was made and shared on social media platformsrdquoldquoSoon money poured in from all over the world and the target was achieved in six days Many NRI organisations from the Arabian Gulf UA UK and Europe called us Muhammedrsquos parents are extremely happy This was made possible only with teamworkrdquo Farisha said adding ldquoI request the government to exempt the taxes on the import of Zolgensma and to give free treatment to children suffering from SMArdquo