Delhi couple resorts to crowdfunding for treatment of their infant suffering from rare genetic disorder
Mar 05, 2021
New Delhi [India], March 6 : A couple living in Delhi's Paschim Vihar are trying to raise Rs 16 crore through crowdfunding to save their 10-month-old child Rehansh's life, who is suffering from Spinal Muscular Atrophy (SMA) 1, a rare genetic disease.
SMA-1 is a genetic disorder in which a child is unable to attain his or her bodily development milestones corresponding to age.
"We came to know of the disease very late. When we took him to a doctor, the doctor said that there is only one treatment for this disease. We have only 13 months left. We have to get him treated in any way in the next 13 months. Crowdfunding is the only option left to us, but there is not much response yet because the amount is quite big. We appeal to the people and the government to come forward and help us save our child's life," Rehansh's mother, Rudrakshi, told ANI.
"For four or five months, Rehansh had no problem, he was like a normal child. But after six months, he didn't reflect the milestones he was expected to reach as per his age. Earlier, he used to sit with support, but after a while, he couldn't sit up even with support. After that, when we saw him not corresponding to the normal milestones of a child, we consulted the doctor," she added.
"The neurologist told us to get genetic counselling done and get SMA-1 tested. When we did the test, we found out that Rehan is an SMA-1 positive child," she said.
She further informed that three years ago, gene therapy was developed as a treatment for SMA-1 that is not available in India. It is available only in the US and costs Rs 16 crores.
Dr Anne Mathew, who is treating the child, informed, "Children with this disease don't survive beyond two years. He's fine now but is going to get weaker and won't be able to sit, swallow or breathe. There's only one treatment where he can be given a missing genetic code via a virus. It's a one-shot cure and the most expensive drug."
Speaking to ANI, Rehansh's father Manish Suri said, "If every family contributes even a little, we will be able to get our child treated. The doctor has told us that the disease is extremely rare, the ration is one in 10,000 children. We never thought that Rehansh had any problem because he was normal."
"We came to know that the Mumbai-based couple saved their child Tiara through crowdfunding. The Indian government also helped them, so we have also used this platform to save our child and are appealing to the government and people to help us save our child's life," he added.
"Earlier, I was in a job. Later, I started stepped into property dealing. It is not happening now because Rehansh is in much need of care. The wife works in a bank but she has taken maternity leave. Since then, she is on leave without pay," Manish further said.
