Mumbai: Parents seek affordable treatment as 6-month-old suffering from spinal muscular atrophy dies

Parents of children living with spinal muscular atrophy or SMA poured their hearts out on Twitter as they learnt about sixmonthold Aarav losing his battle against the genetic disorder on Friday morning at AIIMSDelhi The parents expressed helplessness at the fact that the cost of treatment for SMAType 1 is prohibitively highFollowing relentless efforts one of them parents to baby Teera from Mumbai have managed to raise resources after the government granted customs and GST waiver of Rs 5 crore on the medicine ZolgensmaAaravrsquos uncle Ankur Kumar is distraught that his condition could not be diagnosed until it was too lateldquoWe do not want any more parents to lose their child to SMAType 1 Wake up government our SMA kids are dyingrdquo cried the parents of SMA type 1 children across the country urging the Prime Minister to interveneIn its report lsquoRare disorder 5 more babies on life support across the countryrsquo of February 12 midday had highlighted the condition of a comatose Aarav who was on ventilator support since February 9The childrsquos uncle Ankur Kumar said his blood pressure plunged around 5 am and in no time the ECG monitor threw up a flat line ldquoDoctors declared my Aarav deadrdquo he saidAnkur then braced for another uphill task ldquoMy sister Poojarani is fighting Leukaemia and we had no option but to inform her about Aaravrsquos death She is in a state of shock and is holding me responsible for not keeping up my promise of getting her Aarav back to her I cannot even face herrdquo he saidLast moments of sixmonthold Aarav who passed away on FridayAnkur is distraught that Aaravrsquos condition could not be diagnosed until it was too late After burying the mortal remains of Aarav in Ghaziabad Uttar Pradesh Ankur urged the government to help other SMAType 1 kids He has also decided to be the voice for SMA childrenldquoMere pass mama bolne wala chala gaya aur isilye sabhi SMA bachon ka main mama banke awaj uthaugardquo he saidlsquoNeed for institutional supportrsquoldquoSometimes a childrsquos case is highlighted in the media Generous hands come forward But not every post about fundraising can go viral Attempts should be made at the institutional level rather than being limited to casetocase basisrdquo said Alpana Sharma Cofounder ndash Director Patient Advocacy CureSMA Foundation India a support group floated by SMA children parents and whose son is SMA type 2She said the medicine has to be imported from the US and many children have in the past received it but only by lottery ldquoThere is no consensus on what the government process will be All these processes should be changed at the organizational level and all children should benefit from itrdquo she saidDr Razeena CoFounder and Director of patient empowerment CureSMA based in Kerala said they lost nine kids to SMA last year despite early diagnosis and multidisciplinary careldquoAll were affected with pneumonia In some cases by the time pneumonia got controlled muscle weakness progressed rapidly and multisystem involvement added to the risk With the families our compassionate doctors and support from outside we tried for each case Unfortunately we couldnrsquot save any of themrdquo said Dr RazeenaHoping for a miracleMeanwhile the past 17 days have been torturous for the family of 10monthold Fathima Haizel from Calicut who suffered a cardiac arrest following lung infections While the baby is on life support her family and doctors are hoping for a miracleIn Tamil Nadu a 4yearold girl who spent 28 days in the hospital has a respiratory infection which progressed to pneumonia Eventually doctors made her undergo G Tube Fixation She has just reached home though not out of risk Her muscles have become weak which make her put too much effort for breathingTweet talkUnmesh DeshpandeUnmeshDeshpand8This is really heart wrenching to lose a child when many life savings drugs are available We have lost so many lives already Parents are living under fearLoudly crying face Have mercy and bring medicine to India at affordable cost ZOLGENSMA Risdiplam Spinraza battleagainstsmaPrakash VprakashvsvWhile we the parents are ready to take those pain and suffering on us to set our kids free we could not find a way to do so We are left with the only option to end their sufferings through the life saving medicinesMadhuri DeviMadhuri25293302If medicine were available b4 getting the condition worst of the patient might be more useful I request to the narendramodi to make availability of these medicine in India for my son SMA patient and many more like him who are seek for these lifesaving drugs to save their lifeFeb 9Date since when baby Aarav was on life support