New Delhi [India], March 6 (ANI): 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. (ANI)

New Delhi [India], March 5 (ANI): Prime Minister Narendra Modi on Friday said there are two ways to fight climate change and calamities — one is through policies and orders, while the other is through behavioural change.
Delivering the keynote address at the CERAWeek 2021 through video conference, PM Modi said the share of non-fossil sources in India’s installed capacity of electricity has grown to 38 per cent.
“India is working to increase the share of natural gas from the current 6 per cent to 15 per cent by 2030. LNG is being promoted as fuel. He also mentioned the recently launched National Hydrogen Mission and PM KUSUM which promotes an equitable and decentralized model of solar energy generation,” he said.
However, the PM said the most powerful way to fight climate change is behavioural change and asked the people to ‘fix’ themselves so the world will be a better place.
“This spirit of behaviour change is a key part of our traditional habits, which teach us consumption with compassion. A mindless throwaway culture is not a part of our ethos,” he said.
The Prime Minister also expressed pride in Indian farmers, who are constantly using modern techniques of irrigation, while noting that there is growing awareness on improving soil health and reducing the use of pesticides.
He remarked that today the world is focussing on fitness and wellness. “There is a growing demand for healthy and organic food. India can drive this global change through our spices and our Ayurveda products,” he added.
He also announced that the Centre is working on metro networks in 27 towns and cities for eco-friendly mobility.
The Prime Minister said for large-scale behaviour change, the country needs to offer solutions that are innovative, affordable and powered by public participation, citing examples like people embracing LED bulbs, Give It Up Movement, increased LPG coverage, affordable transportation initiatives. He expressed happiness about the growing acceptance of ethanol across India.
PM Modi further noted that over the last seven years, India’s forest cover has grown significantly, the population of lions, tigers, leopards and waterfowls has grown. “These as the great indicators of positive behavioural changes,” he said.
He concluded, “Now is the time to think logically and ecologically. After all, this is not about me or you. It is about our planet’s future. We owe this to our coming generations.”
PM Modi received the prestigious CERAWeek Global Energy and Environment Leadership Award. The award recognises the commitment of leadership towards the future of global energy and environment, and for offering solutions and policies for energy access, affordability and environmental stewardship. (ANI)

Chandigarh (Punjab) [India], March 5 (ANI): The Samyukt Kisan Morcha on Friday demanded a high-level judicial inquiry into the violence that occurred on Republic Day in the national capital.
“SKM demanded a high-level judicial inquiry into the incident that happened on Jan 26, 2021, where a peaceful Kisan Parade was intentionally disrupted and the route was blocked under a deep-rooted conspiracy hatched by Delhi police at the instance of Central Government,” read a press release by the Morcha.
Today the legal panel of SKM held a press conference at Kisan Bhawan Chandigarh against the repressive measures and violation of human rights at the hands of the Centre and Delhi Police in order to foil the peaceful agitation of farmers against the three farm laws enacted by the Central Government.
They further demanded the immediate release of the farmers lodged in different jails of Delhi and withdrawal of false cases registered against farmer leaders on large scale under very serious and cognizable offences and scrapping of notices being issued to hundreds of farmers in Punjab, Haryana, Rajasthan, Uttar Pradesh, Uttrakhand under the garb of joining investigation with intention to implicate them in false cases.
More than 20 FIRs have been registered against suspected and unidentified persons in which the police is intending to involve innocent persons by issuing notices. Legal penal has called upon the farmers not to be afraid of the notices and repressive measures being taken by police and not to join the investigation and also not to respond to the notices.
They further told that till today 125 farmers out of 151 have been released on bail and others are likely to be released as their bail applications are pending for hearing. The tractors and other vehicles which were illegally retained by the police need to be released as early as possible. The legal panel is also considering initiating legal action against police officers who are responsible for torture and causing injuries to the farmers.
The legal panel and the SKM have called upon the people to come forward against the repression, putting barricades on the roads, obstructing the passages and for the restoration of democratic rights and civil liberties being curtailed by the central government which is posing a great danger to the democratic system of the country.
They further told that tomorrow for repealing the three black laws, legal guarantee on minimum support price (MSP), and shunning the repressive tactics, Kundli-Manesar-Palwal (KMP) expressway will be jammed from 11 am to 4 pm. (ANI)

Indore (Madhya Pradesh) [India], March 5 (ANI): The Indore Lokayukta Police on Friday filed a corruption case against two policemen over charges of bribery.
Both the policemen were posted at Bhanwarkuwan police station. They allegedly demanded a bribe of Rs 20,000 from a private bus driver for freeing his bus.
“Ramkumar Sharma, a resident of Dewas, had complained to the Lokayukta that his bus, which runs between Indore and Dewas, was taken to the Bhanwarkuwan police station by constable Rahul Raghuvanshi and another policeman for running out of permit,” Lokayukta Inspector Vijay Chaudhury told ANI.
“There he was asked for Rs 20,000 for freeing his bus by the constables. The Lokayukta registered the case recorded by the complainant. On March 1, the Lokayukta laid a trap to catch them red-handed. But, both the accused got a whiff of this and disappeared from the police station,” he added.
The Lokayukta filed a case against both of them under the Prevention of Corruption Act on the basis of the recording bu the complainant. Both the accused are absconding. (ANI)

Kolkata (West Bengal) [India], March 5 (ANI): Amid speculations of actor Mithun Chakraborty joining the Bharatiya Janata Party (BJP) at a rally of Prime Minister Narendra Modi in Kolkata, West Bengal BJP Vice President on Friday said if the actor shares the stage with the Prime Minister on March 7 during the party’s rally in Kolkata, then the people of West Bengal will be happier.
He also stated that the actor’s coming into the BJP shall be good for both the party and West Bengal.
“If Mithun Chakraborty comes, it will be good, both for Bengal as well as our party. If he comes on a stage where there is PM, the people of Bengal will be happier, ” said Singh, when asked if Chakraborty will join BJP.
Prime Minister Narendra Modi is scheduled to hold the first rally in West Bengal on March 7 after the announcement of the assembly poll schedule. The rally will be held at the Brigade Parade Ground in Kolkata.
The elections for the 294 Assembly seats in West Bengal will begin on March 27. The state is going to witness eight-phase Assembly polls this year.
West Bengal is likely to witness a triangular contest this time with TMC, Congress-Left alliance and the BJP in the fray. (ANI)

Mysuru (Karnataka) [India], March 5 (ANI): Two days after Karnataka Minister Ramesh Jarkiholi tendered resignation from his post over his alleged involvement in the sexual assault of a woman, former Karnataka Chief Minister HD Kumaraswamy on Friday said whosoever is claiming to have intimate video of high profile politicians in the state must be arrested, adding that “these blackmailers” are a threat to the society.
Kumaraswamy while speaking to the reporters here said, “Whosoever is claiming that he has CDs, must be arrested first. Because releasing such CDs in a healthy society is dirty.”
He was reacting to the recent allegation of “sex for job” against BJP MLA Ramesh Jarkiholi by social activist Dinesh Kallahalli on March 2. Jarakiholi resigned within 24 hours of the release of a purported sex tape that showed former Karnataka Major and Medium Water Resources Minister Ramesh Jarkiholi in a compromising position with a woman.
Stating that Rs 5 crore deal was struck in the case, Kumaraswamy said those extorting money should be put behind the bars immediately.
The JD(S) leader also alleged that the entire episode took place in the past two to three months and many high profile people were involved in the case. However, he denied to reveal the names.
“It is the responsibility of the government to get to the bottom of the
case and bring out the truth,” Kumaraswamy urged the Karnataka government.
Stating that a shameful atmosphere has been created in the state due
to “these blackmailers”, Kumaraswamy said, “With these videos, they are blackmailing for money and creating a nasty situation in the state.
He also added that shooting private videos is an offence.
Dinesh Kallahalli, the complainant in the Ramesh Jarakiholi case welcomed Kumaraswamy’s statement that blackmailers must be arrested.
He said “I welcome Kumaraswamy’s statement. Those who are blackmailing should be
arrested as soon as possible, I am in support of it,” Kallahalli told reporters as he
unexpectedly appeared before the Cubbon Park police station in the city a day after the summon.
On March 2 Kallahalli, who is a social activist, had told reporters, “I have lodged a complaint with police, demanding a probe into a sex scandal involving Ramesh Jarkiholi. The victim woman was offered a job in Karnataka Power Transmission Corporation Limited (KPTCL). Upon reaching the pre-decided location, the woman was sexually assaulted and now is being threatened by the Minister and his people.” (ANI)