Nihal Bitla, from Mumbai, was diagnosed with Progeria, a disease in which the person ages faster than others. It weakens the internal organs of the body and mostly heart attack ends up being the cause of death.
Progeria, is found in up to 250 children around the world. Whoever suffers from the disease is said to die at or before the age of 10. But Nihal’s case has been exceptional, who recently celebrated his 15th birthday on 20th January and this shocked the doctors.
Nihal has become very weak and fragile. All his bones, blood vessels, etc are clearly visible through his skin and he has a long head with no hair. His skin is full of wrinkles and just at the age of 15, he appears to be 60. The arteries of anyone suffering from this disease, become hard and due to the rigidness, restricted blood flows to the heart; increases the chances of death due to heart attack.
So far, he is the oldest of all the Progeria patients in India. Nihal thinks of it as a gift from GOD and has big plans for his future. He revealed: “I have never felt that this is a disease, because I’m a special child. This is like a God’s gift to me.”
Nihal has stopped going to school as some students started teasing him, for the way he looks. They compared him with a movie character Auro and told him, he would die too due to heart attack, as the movie character did.
He decided not to go back to school and spends most of his time playing video games. He loves computer games too. Whoever knows him, speaks of how polite and sweet a child he is. He is regarded as a very calm, caring and helpful kid. He thinks very positively of his situation.
His family revealed that he was like all the other kids till 18 months of his birth. It was after some years that he started losing his hair, got wrinkles on his face and experienced weakening of his bones. His family didn’t know what was happening to him and had taken him to several physicians. Nobody could tell that he had progeria, but doctor Parag Tamhankar, who diagnosed Nihal with the disease 5 years ago.
He weighs just 12.5 kgs and is 4 feet tall. It is one of the symptoms of Progeria that the patients don’t tend to gain weight. As Nihal grows older, his brain wouldn’t grow with him, it will remain young. His condition will only worsen with the passage of time.
Nihal has been provided with an opportunity by the Progeria Research Foundation in Boston. They believe that a medicine that cures cancer named Lonafarib, can be helpful in ceasing the aging factor. Nihal underwent a session in December.
The aim of the researchers is to help Nihal put on weight and they believe that this drug would fight against heart attacks by mitigating faults in blood vessels. After his first visit to the clinic, Nihal had gained 4 kgs but had to discontinue the treatment due to liver infection.
It is not certain whether Nihal will be able to live a long life with the help of this drug but he has revealed three of his wishes. He wants to meet Honda’s Asimo robot, visit Disneyland and says he would unfold his third wish sometime later in his life. His father said, this treatment is worth a shot as improvement in his weight was noticeable.
We hope that Nihal’s desires do come true and wish him all the best for his treatment!