So rare was the cellular disorder that 15-year-old Tanaya Jindal was suffering from that when the time came to write down the name of the illness, in the application to the CBSE requesting for a writer, her doctor parents could not put it down. Suffering from an “evolving” and yet to be diagnosed disease, the brave teenager — who was denied a writer as they could not correctly describe her illness and instead granted an extra hour for examination — fought uncertainty of her illness, her fears and intolerable pain to emerge victorious at the Class X CBSE examination where she scored a 8.8 CGPA (83.61 per cent) marks.
It was in September 2015 when her fingers turned blue (cyanosis) and she started suffering unbearable pain in her muscles and right upper limb, that her doctor parents got the first inkling of her medical condition.
“Since it was an evolving disease, there was no fixed diagnosis and treatment was mainly symptomatic. She missed the entire second term of Class IX. By the first term of Class X, she got a little better, but again started having trouble in the second term. My daughter has been extremely brave, but I think credit is also due to her teachers, who supported her immensely, helping her catch up,” said Tanaya’s mother, Sital, an ENT surgeon.
Missing classes in school meant that the teenager needed home tuitions from a tutor every morning for Science and Mathematics for two hours. In bed for long periods of time owing to extreme fatigue and body pain, Tanaya said, she could not study for more than an hour or two at a stretch.
In her Class IX, her school, The Orchid School, allowed her to have a writer in the examinations, a practice which the family had hoped would be continued in the Class X final examinations too. But it was not to be.
“We sent an application to the board for a writer, but they needed us to specify the disease. Since it wasn’t exactly clear even to us, we couldn’t do so. The board has some specific ailments for which a writer can be granted. In her case, she got an extra hour, which was also helpful,” said her mother.
However, the teenager said had she got a writer, she would have scored much more. “Even now, I have extreme fatigue. I suffer from pain when I write beyond an hour,” said Tanaya, who continues to take hour-long physiotherapy sessions.
The teenager, who wants to pursue Commerce after Class X, said her ultimate aim is to get into product design.