Can you save Vedansh, Mumbai? 22-month-old with SMA needs Rs 9 crore for urgent treatment

For 22monthold Vedansh Singh the clock is ticking The toddler from Sikandarpur village in Haryana has been diagnosed with spinal muscular atrophy SMA Type 1 a rare genetic disorder that causes progressive muscle weakness His family says his treatment could cost around Rs 9 croreVedansh SinghWith the family struggling to raise the money Dadarbased influencer Mayuresh Gujar 26 has taken up the fundraising campaign through his initiative Every Home Matters Gujar and his team say they have raised around Rs 50 lakh in nine days appealing for donations at temples churches and during Ganpati aagman events across Mumbai Their target is Rs 9 croreMayuresh Gujar with Vedansh Singh at the toddlerrsquos home in Sikandarpur village Palwal district Haryana last monthThe child they are fighting forName Vedansh SinghAge 22 monthsCondition SMA Type 1Parents Sushant 32 and Harshita 28Treatment Ongoing at AIIMS DelhiFundraising target Rs 9 croreVedansh is the couplersquos only child His father Sushant works as a deputy manager at a private firm in Faridabad Sushant said the family had been trying to raise funds for nearly a year and had contacted more than 150 influencers and other individuals He said Gujar was the only one who responded positivelyMayuresh Gujar with Vedansh Singhrsquos donation banner during a Ganpati aagman event in Lalbaug last weekWhy the treatment is urgentgtgt According to Sushant doctors at AIIMS have advised treatment before Vedansh turns two and told the family that multiple therapies may be requiredgtgt ldquoThe doctor told us that if we do not do the treatment the child will not last more than two years because muscles deteriorate every day in this diseaserdquogtgt SMA is a progressive genetic disorder in which motor neurons are lost causing muscle weakness and atrophy Earlier treatment can improve outcomes but the appropriate treatment and timing depend on the individual patientrsquos diagnosis and clinical conditionMayuresh Gujar with Vedansh Singhrsquos donation banner during a Dahihandi event in Dadar recentlyFather speaksldquoFor the last year I have messaged and tried to contact more than 150 people like Mayuresh for help but he is the only exception who replied in a positive way He actually gave us new hopeAt one stage I was getting suicidal thoughts At that time I was thinking that I was useless as I was not able to do my childrsquos treatmentrdquo Sushant said the familyrsquos financial situation had left him feeling helplessldquoI donrsquot have words to express my feelings for Mayuresh and his team They came into our life like a God for us They came to our home saw Vedansh and it felt that they were doing more than our family membersrdquo he told midday on ThursdayMayuresh Gujar with Vedansh Singhrsquos donation banner at ISKCON temple in Juhu recently PicsBy Special ArrangementMayuresh steps inGujar who has more than 46 lakh Instagram followers took up Vedanshrsquos case under his initiative Every Home Matters after learning that the family had struggled to find help ldquoWe felt he was in urgent need so we prioritised himrdquo he said Gujar and his team travelled to Sikandarpur on August 19 to meet Vedansh and his parentsHe said the family had raised Rs 70 lakh through an earlier campaign but it had stalled for nearly a year ldquoThey had almost given up I told myself we needed to start first show people that I was genuinely working hard and then they would trust usrdquo he saidThe fatherrsquos struggleSushant said he finds it difficult to watch his son deteriorate while being unable to afford the treatmentldquoWhen I reach my home every evening and see Vedanshhellip itrsquos very painful and as a father Irsquom helpless I even canrsquot cry in front of my wife Harshita 28 and my mother Kamla 56rdquoHe also recalled meeting Haryana Chief Minister Nayab Singh Saini twice around 10 months ago and asking for financial assistanceldquoI met our Haryana Chief Minister Nayab Singh Saini twice 10 months ago and requested him to help us to save my child But he said lsquoGovernment donrsquot have any funds for such a disease We can only donate Rs 1 lakh through CM Relief FundrsquordquoMumbai steps upGujar said his team spends six to seven hours a day raising funds on the groundWhere the team has appealedgtgt Parel Ganpati aagmangtgt Babulnath templegtgt Siddhivinayak templegtgt Shri Swami Samarthgtgt Mahalaxmi templegtgt ISKCONgtgt Mahim churchgtgt Various Dahi Handi eventsldquoWe spent six to seven hours every day working at ground level We have almost visited all the temples We started appealing to people from Ganpati aagman in Parel where we got a very good response by raising R5 lakh last Sunday September 6 and till now we have raised Rs 50 lakh in the last nine daysrdquo Gujar saidlsquoDonate only through familyrsquos accountrsquoGujar urged people to beware of fraudulent fundraising accounts He said daily updates are posted on his Instagram page mayuusic_vines_ while donations are routed through a QR code provided by Vedanshrsquos familyldquoWe donrsquot accept cash If anyone asks for cash in our name please donrsquot give it Those who wish to help should donate only through Vedanshrsquos accountrdquo he saidldquoDonate as much as you can If 75000 people give Rs 1000 each or four lakh Mumbaikars give Rs 150 each it could make a huge difference and help save VedanshrdquoThe fundraising gapTarget Rs 9 croreRaised Around Rs 50 lakhStill required Around Rs 85 croreTimeframe sought by campaign One month