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Mumbai police couple raises ₹56 lakh to treat rare disease of their 4-year son
The amount was raised through crowdfunding and funds sponsored by philanthropist and industrialist Ratan Tata
Mumbai: A Mumbai police couple has raised a total of ₹56 lakh to treat their four-year-old boy suffering from a rare disease called spinal muscular atrophy (SMA Type-III). The amount was raised through crowdfunding and funds sponsored by philanthropist and industrialist Ratan Tata.
The parents, Dipali and Nitin Balip, attached with Wadala and Chunabhatti police station respectively, noticed that their boy, Aarush, had a problem while crawling, sitting, and walking. They undertook several diagnostics tests to find out what was wrong. In February, 2021, the couple met Dr Parag Tamhankar at Center for Medical Genetics in Mulund, who confirmed that Aarush has SMA.
“We were initially told the expenses could be around ₹16 crore. The news completely shocked us. I felt shattered,” said Nitin, who had lost his parents at a young age and was brought up by his uncle.
“We did not have that much money. I heard that recently a girl was treated for the same disease at PD Hinduja Hospital in Mahim, so Dipali and I decided to meet the doctors at the hospital. We met Dr Neelu Desai, paediatric neurologist there who told us that Aarush has Type III SMA and the expense for medicine could go to ₹5 crore. Though the expenses had gone down significantly but still it was out of our reach,” said Aarush’s mother Dipali.
The couple then tried several things including a plan to sell the only house they own at Kalamboli in Navi-Mumbai but they realised the amount they were getting was very less as they had purchased the house on home loan.
The couple then through doctors at PD Hinduja Hospital, Mahim, met members of a crowdfunding platform called Impact Guru and learnt about how it works. The staff helped the couple make a video appeal seeking funds for the kid’s treatment.
Neelam Nalawade, a police constable and batchmate of Dipali, who is currently posted at Sahar police station shared, “The Maharashtra police has a staff strength of 2 lakh employees and we were hopeful of raising funds for Aarush’s treatment. Accordingly, the link of the crowdfunding platform was shared with all our colleagues and money started coming in.”
Anand Lohar, who is attached with the Chunabhatti police station where Nitin works, informed, “As soon as the link was shared with all our Mumbai police colleagues on WhatsApp groups, we started donating funds. We even met a few influential people in our police station jurisdiction and asked them to donate.”
The family, through crowdfunding, managed to collect around ₹7 lakh. Later, Dipali learnt about Tata Trust and went there to seek help there. “I told the watchman the entire story. He then passed my message inside and I managed to meet Shantanu Naidu, assistant of Ratan Tata. Shantanu was very helpful and took all my details and promised me that he would revert soon,” said Dipali.
The very next day, Shantanu informed Dipali that Ratan Tata had approved the amount of ₹49 lakh for the treatment of her child. “It was a very happy moment for me and accordingly, I submitted all my documents to the office of Tata Trust. His office contacted Roche Pharma to get the medicine Evrysdi (risdiplam) and have already paid for the one-year medicine of Aarush,” said Dipali.
“Aarush is orally inoculated every day. The inoculation process started from April 10 as soon as the medicine was made available to the family,” said Dr Desai.
“In Aarush’s case, we have primarily recommended medicine for five years; however, depending on his progress and regular check-ups further decisions will be made,” added Dr Desai. After the medicines were given to Aarush, he along with Dipali, his mother and father Nitin even met Ratan Tata, thanking him for the funding to import the medicine.
Tata even promised the family that he will monitor the health of Aarush and will sponsor for his medicine in future as well.
“Mr Tata has paid ₹49 lakh for my son’s treatment. We have the ₹7 lakhs kept in the bank account of Impact Guru. Every three months, doctor’s have advised us to carry out tests and regular check-ups to check the progress of the medicine on Aarush,” said Dipali.
