Mumbai: Six-month-old baby Teera finally gets her lifesaving shot

Sixmonthold Teera was administered a lifesaving imported gene therapy at Hinduja hospital making her one of the 10 infants with spinal muscular atrophy type 1 in the country to have got the drug Zolgensma which costs Rs 16 crore in the past year While the other kids with SMA got the therapy on compassionate grounds through a global lottery Teerarsquos parents redefined perseverance in raising money through crowdfunding The government also waived taxes of Rs 5 crore to facilitate the importDespite winning the lottery a few children were not lucky The rare musclewasting disease either claimed their lives before they got the therapy or they were rejected due to infections The lifesaving shot for Teera has once highlighted the need to make the treatment affordable for kids with SMA type 1Alpana Sharma CoFounder and Director Patient Advocacy CureSMA Foundation of India said ldquoThere are many Teeras in our country and they deserve a chance to live Many children in India have received this injection even before the Teera and the tax on it has also been waived This is not the first case But children get these drugs by lottery There 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 itrdquoSharma said the government should take the initiative as no pharma company will bring it to India at an affordable price on its own ldquoItrsquos the need of the hour to make some lasting institutional policy changesrdquo she said adding that not all parents can mount a campaign to raise funds seen in Teerarsquos caseSMA is a genetic disorder that weakens muscles and is often fatal for kids Such babies struggle to walk sit eat and even breathe on their own ldquoWe now have around 525plus patients registered with us from all over India We dream of an SMAfree world and a barrierfree universal healthcare for allrdquo said SharmalsquoFirst girl in 3 generationsrsquoPune banker Dhawal Keshari and his family were ecstatic when they got their first girl child in three generations The happiness turned into sorrow when the infant Hiya was diagnosed with SMA type 1 ldquoOur whole world changed We googled every possible information which stated she wonrsquot survive beyond her second birthdayrdquo said Keshari The family managed to get a drug that costs about Rs 1 crore three months later While she showed some signs of improvement she still struggled to swallow and breathe They then enrolled for the lottery for oneshot Zolgensma and were lucky But the pandemic added to their anxiety as the drug which has a short shelf life got delayed She finally received it around her first birthday in June 2020 and became the first recipient of the drug in IndialdquoFew months post dosing she started rolling over her first milestone Followed by a lot of physiotherapy and dietician consultation she even gained some weight She can now sit with little assistance and is more vocal With such positive signs we are hopeful to have her a better quality of liferdquo said Keshari He feels the government should make screening for SMA compulsory during pregnancy and make the drug cheaper16monthold Kiaan too got the therapyDelhi couple Chandani and Aman Vig got their first child Kiaan after 8 years of marriage They learnt about his SMA after about 11 months Chandni said it was Godrsquos grace that Kiaanrsquos name got shortlisted in the lotteryKiaan is another recipient of the drug through the lottery He is able to eat and chew food on his own said his parentsldquoMy son will be two years old by June He can sit has a grip in his fingers and can even hold his head for a while Also he is able to eat and chew foodrdquo Along with him an SMA type 1 girl too had been shortlisted but her name had to be dropped at the last moment as she developed an infection and was put on life support she continues to be in hospital even todayrdquo said ChandiniTeerarsquos parents over the moonDr Neelu Desai Consultant in Paediatric Neurology P D Hinduja Hospital amp MRC said ldquoWe undertook the required training and the injection was administered today Friday under my supervision Baby Teera is doing fine and will be under our observation for a dayrdquoTeerarsquos parents Priyanka and Mihir Kamat said they will be ever grateful to all those who helped their child ldquoWe are also thankful to the Prime Ministerrsquos Office and Chief Ministerrsquos Office Maharashtra for the timely intervention and support extended It has been a very arduous journey for the last 6 months and we thank each one of you who poured their love by donating to give Teera a second shot at life We pray all such children diagnosed of this disease also get the same love affection and care that Teera was blessed to receiverdquoRs 16 croreCost of Zolgensma the gene therapy for SMA525No of SMA patients registered with CureSMA Foundation