A teenager in Mumbai celebrated his fifteenth birthday, much to the surprise of his doctors.
It’s not that life expectancy has severely decreased in India, but teen, Nihal Bitla suffers from Hutchinson-Gilford progeria syndrome, which ages his body eight times faster than normal. His medical condition leaves him bald and wrinkled with severely weakened limbs, but what made Nihal particularly noteworthy is that children affected by this disease only has a life expectancy of 14 years.
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By blowing out his candles for his 15th birthday on January 20, Nihal officially became the oldest person diagnosed with progeria in his country.
Children suffering from this disease die from heart conditions when their arteries become hard and narrow—something that usually affects adults over 60. Despite the challenges he faces every day, however, Nihal remains positive, stating, “I have never felt that this is a disease, because I’m a special child. This is like a God’s gift to me.”
His child-like innocence also remains intact. Like most boys his age, he enjoys recreational activities like playing computer games. He is still enjoying his youth while he can, but Nihal’s body is already betraying him. Just under four feet tall, he weighs only 12.5 kg and already looks like an elderly man with leathery skin and a bald, enlarged head.
Due to teasing from his classmates, Nihal stopped going to school, but last December, he left the bullies behind when he was sent to the Progeria Research Foundation in Boston, where he underwent clinical trials for a cancer drug that doctors hoped would slow his ageing process.
With only 200 to 250 patients living with the disease at any given time, it took a while for Nihal’s parents to notice that something was wrong with his development. They assumed he was normal until he was 18 months old, when they noticed that there are light patches and dark spots on his skin. Later on, it became clear that something was wrong with the child: he was not growing and developing as a kid normally would. His joints were weak, his hair fell out, his veins showed, and his skin aged very rapidly.
Doctors in Mumbai noted that he has a genetic disorder, but they were unsure about his condition, specifically. It wasn’t until Nihal was ten years old when pediatrician and geneticist Dr. Parag Tamhankar diagnosed the child of progeria, and was said to be the first child born with the disease in India. The genetic mutation was something Nihal had to carry alone in their family; his siblings, 11-year-old Sonu and four-year-old Lucky were born normal and healthy.
Dr. Tamhankar referred Nihal to Boston’s Progeria Research Foundation, where he began trials for treatment.
Research showed that Lonafarnib, the drug used in Nihal’s tests, reverses the changes in blood vessels that cause heart attacks and strokes. While doctors are still unsure whether or not the drug will lengthen his life, the treatment is going to be considered promising if it helps him gain weight and stops his blood vessels from hardening.
Initial reports did say that Nihal noticed some changes in his body: his joints have become more flexible, and he has gained weight.
However, the young boy is now facing other types of dangers. He had to stop taking treatment when he started having a liver infection, as the drugs he needed cannot be taken together with his Lonafarnib.
Nihal now spends his time playing computer games, surfing the Internet, and painting; however, there are three wishes that he does hope will come true: meet ASIMO the Robot, which was made by Honda in Japan; go to Disneyland in California; and a secret wish that he said he will reveal later on in life.