Toddler with rare genetic disease gets new lease of life after 16 cr treatment at Bengaluru hospital
Bengaluru, Feb 16: Fourteen-month old Fatima faced a bleak future afflicted with a killer muscular disorder, but a Rs 16 crore 'revolutionary' gene therapy she underwent at a city hospital after winning a 'lottery' has given her a new lease of life.
Fatima, daughter of Mohammed Basil and Khadija from Bhatkal town in the coastal Uttara Kannada district in Karnataka, is recovering after she was given 'Zolgensma', the gene therapy at Bangalore Baptist Hospital late last month.
She emerged "a lucky winner of a lottery" through a compassionate access programme by drug major Novartis that helped her get the costly treatment, affordable only by multi-millionaires, the hospital said.
"The cost of this medicine is about 2.1 million US dollars, which is roughly about Rs. 16 crore," hospital Director (CEO) Naveen Thomas said.
"There is gradual improvement. She is now able to move her leg. It will take time to become like a normal child," her father Basil told PTI.
The toddler was diagnosed with Spinal Muscular Atrophy or SMA, a disease caused by loss of nerve cells, which carry electrical signals from the brain to the muscles.
The protein needed for this signaling is coded by a gene for which everyone has two copies --- one from the mother and the other from the father, according to Thomas.
He said a child develops this disorder only if both the copies were faulty and without treatment, this disease was ultimately fatal.
But the problem is that the treatment is out of reach of most people.
"Only multi-millionaires can afford it! Current treatment options range from medicines, which increase these proteins to replacing the faulty gene. Zolgensma, a gene therapy is a revolutionary treatment, which aims at curing the disease by replacing the faulty gene", he said.
"For the first time in Karnataka, Zolgensma was given at Bangalore Baptist hospital to a child who was the lucky winner of a lottery through a compassionate access programme by Novartis", Thomas said.
Incidentally, the couple had earlier lost a child, who was also suffering from SMA.
"On the 21st day of the 21st year of the 21st century, the baby was given the injection, which is a one-shot cure for this rare disease, said Dr Ann Agnes Mathew, Consultant Paediatric Neurologist and Neuromuscular Specialist.
At present there were about 200 children getting treatment in the Baptist Hospital which is specialised in genetic diseases, more specifically SMA and Duchenne muscular dystrophy (DMD), said the doctor.
She added that previous year alone, 38 children who were getting treatment in the hospital breathed their last in the absence of this expensive treatment.
In Fatima's case, Thomas said: It is a dream come true for doctors in this field. We hope more children receive this treatment and many such treatments will become affordable in the future."
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Strict security measures in place in Mumbai for Messi's events at 2 venues Dec 14, say police
Mumbai (PTI): In view of Argentine superstar footballer Lionel Messi's visit to Mumbai on Sunday, the city police are implementing stringent security measures, like not allowing water bottles, metals, coins inside the stadiums and setting up watchtowers to keep an eye on the crowd, officials said.
The police also said taking extra care to avoid any stampede-like situation and to prevent recurrence of the chaotic situation that unfolded in Kolkata during Messi's visit on Saturday as thousands of fans protested inside the Salt Lake stadium here after failing to catch a clear glimpse of the football icon despite paying hefty sums for tickets.
Messi is expected to be present at the Cricket Club of India (Brabourne Stadium) in Mumbai on Sunday for a Padel GOAT Cup event followed by attending a celebrity football match. He is expected to proceed to the Wankhede Stadium for the GOAT India Tour main event around 5 pm.
"In view of Lionel Messi's visit to Mumbai, the police are geared up and have put in place a high level of security arrangements in and around the stadiums located in south Mumbai. Considering the chaos that prevailed in Kolkata and the security breach, we have deployed World Cup-level security arrangements at Brabourne and Wankhede stadiums," an official said.
Expecting heavy crowd near the stadiums during Messi's visit, the city police force has deployed more than 2,000 of its personnel near and around both the venues, he said.
As the Mumbai police have the experience of security 'bandobast' during the victory parade of ICC World Cup-winning Indian team and World Cup final match at the Wankhede Stadium, in which over one lakh cricket fans had gathered, we are prepared to handle a large crowd of fans, he said.
"We are trying to avoid the errors that occurred in the past," the official said.
There is no place to sneak inside the stadiums in Mumbai like the Kolkata stadium, according to him.
The police are also asking the organisers to provide all the required facilities to the fans inside the stadium, so that there will be no chaos, he said, adding the spectators have purchased tickets in the range of Rs 5,000 to 25,000. After paying so much of amount, any spectator expects proper services, while enjoying the event, he said.
The police are expecting 33,000 spectators at the Wankhede Stadium and over 4,000 at Brabourne Stadium. Besides this, more than 30,000 people are expected outside and around the stadiums just to have a glimpse of the football sensation, he said.
The organisers responsible for Messi's India visit recently came to Mumbai to discuss security arrangements. During the meeting, the Mumbai police asked them not to take the event lightly, according to the official.
After those requirements were fulfilled, the final security deployment was chalked out, he said.
Police has the standard procedure of the security arrangements inside the Wankhede Stadium, where people are barred from taking water bottles, metals objects, coins. Police are setting up watch towers near the stadiums and there will be traffic diversions, so that there is maximum space available to stand, according to the official.
Police are also appealing to the spectators to use public transport service for commuting and avoid personal vehicles to reach south Mumbai.
To avoid any stampede-like situation, police are also taking precautionary measures and will stop the fans some distance ahead of the stadium and public announcement systems will be used to guide the crowd. Barricades will be placed at various places to manage the crowd.
In case the crowd swells up beyond expectation, the police will divert people to other grounds and preparations in this regard underway, he said.
Additional police force has been deployed in south Mumbai to tackle any kind of situation, he said.
