11 June 2012
Ahmedabad: Sujal Shah, 10, suffers from haemophilia, a blood disorder which makes even a minor fall fatal. Sujal, however, has survived greater emotional tumbles — his mother left him when he was just a year old. His alcoholic father used to beat him black and blue which caused internal bleeding and worsened his physical condition. Later, he too abandoned Sujal.
Sujal’s only lifeline is his paternal aunt Reena who has not only become mother and father to Sujal but has also postponed her marriage till the boy becomes a little older. Moreover, the young girl says she wants a partner who understands her decision not to have children. She wants her future husband to be compassionate to Sujal. In fact, Reena has taken Sujal’s sister Prachi under her care as well.
Sujal and Prachi do not have fond memories of their parents. "My parents are dead for me," says Sujal. "My aunt and grandmother are my parents and I am not ashamed of saying that. In fact, they are more than parents to me. They are Gods."
Reena says she never realized that parents could be so heartless. "God will punish them for their heartlessness. It is not Sujal’s fault that he is suffering from haemophilia," she says.
There were times when the Shah family did not have the money to eat as they had to pay for Sujal’s treatment. Khichdi and buttermilk were what they survived on. "Whatever the circumstances and situation, our children never used to sleep hungry," says Sujal’s grandmother Manjulaben. Sujal wants to become a mechanical engineer which he says will be the best way to thank them.
New boost for treatment
Gujarat Haemophilia Society will soon sign a memorandum of understanding with the Polio Foundation, Ahmedabad. Once the pact is inked, haemophiliacs will have access to a transfusion and physiotherapy centre where they will be treated by experts. Dr Nitin Goswami, a physiotherapist associated with the Polio Foundation and the Hemophilia Society, said: "Haemophilia affects joints and it is very important that the patient has access to physiotherapy. It will ease the stiffness in the joints and also strengthen muscles."” Special padded splints will also be made and provided to haemophiliacs. "We have the infrastructure which they need so there is no harm in letting them have access to it," said Dr Prakash Bhatt, CEO of Polio Foundation. "We are glad we are able to help these people in some way as haemophilia is something which not many people are aware of."