Our daughter is sinking and we are helpless: Parents of baby with genetic disorder

How many infants will lose their battle to SMA How long will it take to bring the therapy to India Why is the government not listening to our plea Our daughter is sinking and we are helplessrdquo ask baby Teerarsquos parents who have been outside the ICU of SRCC Hospital where the fivemonthold is on ventilator support for over 48 hours since her lungs collapsedThis Valentinersquos Day Teera will turn six months old and till date the family has managed to collect Rs 12 crore out of the Rs 16 crore required for the gene therapy to treat Spinal Muscular Atrophy SMA that she is suffering fromMidday had in its articles titled lsquoBaby with genetic disorder needs Rs 16 crore therapy to liversquo on December 11 2020 and lsquoParents of baby suffering from rare disorder seek help from Maharashtra governmentrsquo on December 21 2020 highlighted the issue Only government intervention to get the therapy to India at an affordable cost at the earliest can save Teera and other SMA infants The single shot of gene therapy that can save these children costs Rs 16 croreBaby TeeraSpeaking to midday Mihir Kamat Teerarsquos father said ldquoOn January 13 at about 830 pm Teera had a severe aspiration episode and turned blue She almost stopped breathing We patted her back suctioned her airway till she could breathe and showed some sign of normalcy We then rushed her to the Holy Spirit Hospital emergency room to stablise her conditionrdquoOn Thursday morning Teera had to be taken to SRCC childrenrsquos hospital in Mahalakshmi through a cardiac ambulance She was given external oxygen support Her lungs collapsed and she was put on a fulltime ventilatorlsquoWaive off exorbitant taxesrsquoldquoWhile various domestic and international crowdfunding platforms helped us collect Rs 12 crore in such a short span we still need Rs 4 crore But collecting the additional import tax and GST for imported medicines adds an additional 35 percent to the actual expense of therapy The government should hence waive off such exorbitant taxes on lifesaving imported medicinestherapy and make the therapy affordable for common people in Indiardquo said MihirBaby Teera is on ventilator supportMihir added that they wanted to take Teera to Nationwide Children Hospital Ohio USA where the clinical trial for gene therapy Zolgensma for SMA happened The hospital had even quoted a price of 232 million towards the treatment but their plans came to a standstill as Teera is on ventilator supportlsquoCure caught up in red tapersquoAlpana Sharma cofounder and director patient advocacy CureSMA Foundation of India said ldquoSMArsquos cure is not reaching our children in India due to red tapism and only the governmentrsquos proactive measures will help lift this barrier It is our humble request to the government to look into the matter to help save our childrenrdquoShe said the government formed a National Rare Disease Policy but did not address the funding mechanismAnother SMA child strugglesRuvanthika and her brotherRuvanthika 4 from Tamilnadu has SMA type 2 and is on a noninvasive ventilator in hospital since January 15 Her younger brother Kavipriyan is also SMA type 2 and their parents Selva Priya and Rajendran are fighting all odds to save her said Alpana SharmalsquoGovernment should intervene before its too latersquoAlpana Sharma CoFounder and Director Patient Advocacy CureSMA Foundation of India said ldquoWhose child will it be next Is a fear that many SMA parents are living with today with no ray of hope coming in form of support from the state or central government SMA has a cure but the cure is not reaching our children in India due to red tapism and only government proactive measures will help in lifting this barrier and can bring a ray of hope for SMA children at an affordable pricerdquoldquoSpinal Muscular Atrophy a life threatening neuromuscular genetic disease which did not have any treatments all these years has now got newer lifesaving medicines approved by US FDA in recent times however these are not accessible and affordable to Indian patients suffering from SMArdquo said SharmaShe added ldquoCureSMA Foundation of India is committed to Indian SMA Community and it has been our endeavour to bring SMA treatment to India But the cost of these medicines is the barrier to access and we need assistance from the Government to save SMA patients It is our humble request to kindly look into the matter to provide immediate intervention through financial support to help save the life of our dying childrenrdquoldquoThe Government of India made a National Rare Disease Policy but did not address the funding mechanism which is the root cause of all the problems The parents and patients of CureSMA Foundation of India have made several attempts and will continue to do so to let government both at central and state to know that Spinal Muscular Atrophy does not give us luxury of time and that we are losing children and patients rapidly despite a life saving medicine available on this planetrdquo said the CoFounder of CureSWA FoundationldquoThis disease is like a poison slowly spreading in our childrens bodies Itrsquos absolutely heartbreaking for us to see our children wasting away in front of our eyes despite the fact that there is a promising medicine available however just because of lack of funds the lifesaving medicine is not accessible to our children Itrsquos our humble plea to the government to help us save precious life because with progressive and debilitating conditions like SMA itrsquos a Race Against Timerdquo she saidldquoNo parent should have to undergo the grief of burying their child especially when there is a medicine out there that can save their precious life We the unfortunate parents and patients of CureSMA Foundation of India live in constant fear whose turn next Its high time that the government intervenes immediately before we lose more lives due to this draconian disease called Spinal Muscular Atrophyrdquo she added