Rohit suffers from Osteogenesis Imperfecta, that has left his bones so fragile that it breaks at the slightest touch. He has a severe form of this condition (Type-3), wherein a child is born with soft bones that fracture easily, and bones that are not formed normally.
Life has been a constant struggle for little Rohit
“He has been living with this disease since day one of his life. He was born at a local hospital, and we were all shocked and speechless when we first saw him. His head was so big and his legs were bent. People were even scared to look at our newborn. He would cry constantly, and it upset me that I couldn’t console him no matter what I did. But soon, I found out that the reason for his tears was the unbearable pain from his fractured bones.” - Sheela Devi, mother
Several years have passed since, but his condition has hardly improved
“Doctors have refused to treat me. They said that if they try, my bones will break further.My bones are very brittle. If somebody touches me, holds me or even carries me, they tend to break and it causes me immense pain. I cannot endure it, and stay up all night crying. My mummy has been trying to get me treated, but she doesn’t have any money.” - Rohit
At present, the family - consisting of Rohit, his father, mother and sister - is dependent on a small shop that they run, earning around INR 3,000 to 5,000 every month. Things have exacerbated for the family as Rohit's father remains unsupportive.
Even with his limited ability, Rohit helps his mother and sister run the shopSheela has to constantly be at her son’s beck and call, as he is unable to do things like other children. She cannot leave him for even a single moment. Be it feeding or taking him to the washroom, she has to do everything for him. But Rohit doesn’t view his limited ability as his weakness. He tries to help his mother and sister as much as he can, despite his physical restrictions.
"He sits at the shop when I am not there and talks to customers.My boy helps me a lot. He calls out to me whenever someone comes to the shop. He also has a keen interest in studying. He keeps on telling us that he would learn and educate others, but no school would take him. The school authorities told us that people like Rohit cannot be enrolled.” - Sheela Devi
He needs multiple surgeries and physiotherapy to lead a normal life
“We just don’t have the money to afford the treatment that would allow our child to live a healthy life. Our extended family and relatives are aware of Rohit’s condition, but I haven't received help from anyone till date. Even those with influence have faced the other way, despite knowing our plight. " - Sheela Devi
Rohit’s treatment would need multidisciplinary management with multiple orthopedic surgeries, physiotherapy and rehabilitation. The treatment will go on for at least 9 months at a hospital in Bangalore, and would cost INR 25 lakhs, an unimaginable amount for this family to afford.