How a marginal farmer saved his son with a rare immuno-deficiency disorder without insurance
Raja Singh works extra hours on the fields and travels 250 km to PGI every month so that he can afford a life-long injection for 17-year-old Khushman
What do you do when you’re a marginal farmer and find out that your only son has a life-threatening immuno-deficiency disorder that needs expensive treatment life-long? Either you reconcile yourself to destiny or decide to fight. Raja Singh did not give up and found the means to do so, working extra hours on the fields and travelling 10 hours to PGI Chandigarh every month to get the shot that would save his son Khushman. A decade later, the 17-year-old now works the fields himself so that he can double his father’s efforts and save his own life as well.
THE DIAGNOSIS THAT CHANGED EVERYTHING
Khushman, a Class XI student at Government Senior Secondary School, Doda, was only three years old when he began having severe and regular bouts of diarrhoea, high fever, frequent infections and long periods of vision loss. His parents took him to a hospital in Ludhiana, where the doctors conducted many expensive tests to diagnose his condition, with Raja spending close to Rs 10 lakh on medicines, tests and visits. Finally, Khushman was referred to the PGI, Chandigarh. “The doctors admitted him and did several investigations over two months. They finally diagnosed his condition, which they told us was rare and life-threatening and we would have to give him an injection every month to save his life,” shares Raja. Khushman was diagnosed with Primary Immunodeficiency Disorder (PID), X-linked Hypogammaglobulinemia, because of which he has very low levels of serum IgG. This is a life-threatening condition that mandates life-long, monthly injections of Intravenous Immunoglobulin (IVIg) for Khushman to lead a virtually normal and productive life.
Being a marginal farmer, Raja found himself in an extremely challenging situation, for he had already spent a large part of his savings before reaching PGI. And he had no medical insurance. The cost of IVIg varies every month and the cost of therapy increases with growing age, with a single injection (20 gms) priced between Rs 30,000 and Rs 35,000.
With the efforts of the institute, which requested the Punjab Government to support children with PID who could not afford treatment and have no health insurance, Khushman began receiving support. But due to a change in the Central Government’s health policy on rare diseases, there has been a disruption in the reimbursements for almost a year, as a result of which Raja, a land owner of only two acres, has taken another 30 acres on lease. He puts all his efforts into paying the medical bills for his son’s treatment, who has responded well.
THE LONG BUS RIDE TO GET A SHOT
For more than a decade now, Khushman and Raja Singh have been travelling 250 kilometres from Sukhna Ablu, a village in Tehsil Gidderbaha, Punjab, to the Pediatric Allergy Immunology Unit, Advanced Pediatric Centre, PGI Chandigarh. “Our bus leaves from Muktsar Sahib at 3.30 am and reaches Chandigarh at 8.30 am. Then we go to PGI, take the injection and board the return bus by 5.30 pm. We reach our village at 11 pm,” says Khushman, explaining the drill which they have internalized over the years.
Khushman is a bright and energetic child, who is fully aware of his condition and is full of life and zest, studying hard and working with his father in the fields after school. He has taken up Economics, English, History, Maths and Punjabi, and wants to be a police officer when he grows up. “I knew I would be fine, and no, I was never scared of the injections. All the doctors at the hospital recognise me now and often tell me how fast and strong I am growing. While I love my village, I do want to see many places in Chandigarh, but we don’t have time,” he says.
Raja says Khushman is a happy child, who understands their financial limitations and so after school, he rushes to lend a helping hand and is involved in every aspect of farming. He loves using the tractor. “I don’t let him work when the weather is very harsh or there is a smog. We have to make sure his surroundings are clean and he doesn’t catch any infection. He never complains, is happy with all that he has and never makes a fuss about going to PGI. The doctors are very kind and considerate, so we don’t have to wait to get the injections. A separate room is earmarked for these children. He is our only child, and while we have gone through a lot of sorrow, God has held our hand at every step and has given us hope to live each day with joy, seeing our only child healthy and happy. He is an inspiration to many, including us, for he studies, plays and works in the field and while he knows he will require life-long treatment, he is never dejected and never asks why this has happened to him. His love for life and us makes it all worthwhile,” says Raja, smiling.
While Khushman has not been prescribed a special diet, he loves fruits. “I don’t watch TV but I love being in the fields with my father and being outdoors with my friends,” he says.
WHY DOES THIS DISORDER HAPPEN?
“Inborn errors of immunity,” explains Prof Biman Saikia, Department of Immunopathology, PGI, “are important yet underdiagnosed.” This is primarily due to the lack of awareness among physicians and the lack of diagnostic testing, particularly in India. However, due to recent advances in diagnostic techniques, including next-generation sequencing, these are being increasingly diagnosed. “Targetted treatment and bone marrow transplants have shown remarkable success in some of these disorders, further emphasising the need for accurate and timely diagnosis,” adds Prof Saikia. Khushman may see better days that may save him the long bus ride and let him take a tour of Chandigarh that he’s never been able to.
