Although he did not have vision in both eyes, three year old Nishchal Kumar Nepal came across as a friendly child. When I was introduced to him he felt my hands and asked curiously about the watch I was wearing on my wrist. He appeared to be a forthcoming and curious child who liked meeting new people.
However this was not the case when he initially got admitted into the Rehabilitation Unit at B.P. Eye Foundation’s (BPEF) Hospital for Children’s Eyes ENT and Rehabilitation Services (CHEERS) in March 2018. At that time his language skills were not yet developed and his speech was unclear. He needed help in performing all his daily living activities like eating, washing his hands and mouth, changing clothes, using the toilet, wearing shoes or slippers. Refusing to eat vegetables and only liked eating meat and eggs, he also did not know how to socialize or play with other children/peers. Besides showing no reaction or interest when meeting new people, Nishchal also had problems with his mobility –being unable to move his hands and feet like other children his age.
Nishchal’s story begins at R. M. Kedia Eye Hospital in Birgunj, Nepal where he was first taken by his parents (who apparently came from India) for eye check-up when he was about nine months old. He was diagnosed with Paediatric Retinoblastoma in both eyes. Retinoblastoma is an eye cancer that begins in the retina and is most commonly found in young children. In less developed countries Retinoblastoma in children is a life threatening disease with overall survival rates being 70% while it exceeds 95% in developed countries. It is really disheartening to know that his parents abandoned him near the Eye Hospital on hearing about his condition. Maybe they were too overwhelmed and could not accept the fact that he would need surgery to remove both his eyes. Many parents find it extremely difficult to deal with disability.
However destiny seemed to have other plans for Nishchal. Despite being abandoned and left to die, he escaped death a second time. He was miraculously rescued from a dog’s mouth by the residents of the area. The dog was carrying the crying child around. They immediately relieved him and handed him over to Simra police. The police in turn handed him to Amrit Anaath Ashram an Orphanage in the area. Since he was an infant when he was brought there, he was given the name Nishchal, which means “calm or quiet” when registering his birth and a disabled identity card made for him.
After spending a few months at the Orphanage Nishchal was taken for further treatment to the Capital by the Orphanage authorities. To begin with, he was operated at Teaching Hospital in Kathmandu and given prosthetic eyes. He was then sent to Kanti Children’s Hospital for chemotherapy. Although Nishchal had Retinoblastoma in both eyes, interestingly he survived yet another time, leading an active and normal cancer free life for over two years. Fortunately his early diagnosis and treatment helped, although in many cases an earlier diagnosis does not necessarily show early stages of the disease and there is the risk of spreading cancer cells outside the eyes.
When Nishchal was about three years, having now spent a year at the Orphanage, one day Sharmila Tamang a caretaker of the Orphanage happened to meet Sunil Yadav, a teacher from BPEF-CHEERS. Through him she learnt about the programme at the Rehabilitation Unit at CHEERS where children like Nishchal could undergo training to become more confident and independent so as to receive further education in pre -primary and primary schools. She took him to the Hospital, very hopeful for the child.
After a thorough examination at CHEERS by the doctors, Nishchal was admitted into the Rehabilitation Unit. A training schedule was planned out for him based on his needs. His guardian Sharmila was also given orientation and trained on how to handle him.
The teachers at CHEERS worked hard on him. When the chairperson from the orphanage came to meet him within a month of his stay at the Rehabilitation Unit, she was overwhelmed by his progress and shed tears of joy. He now talks on the phone with her from time to time whenever she calls.
Now after five months at the Rehabilitation Unit there is significant improvement in his condition. He can move around on his own, eat his own food, use the toilet with supervision, wash his hands, and talk in a clear manner and to interact or socialize with new people. Although he still does not like vegetables very much Nishchal likes eating fruits, eggs and meat. He has empathy for children who are younger than him. He enjoys listening to music and is fond of cars, bicycles and cars.
Nishchal graduated on 10 August 2018. He will be provided support in being admitted to a primary school so that he can continue his education and live a life of dignity and hope just like other children his age. We wish him a very bright future!
