In Nilambur, a tribal youth rides on learning to cope with genetic disorders

A motley group of children huddle around a youth by the side of the road that leads to Appankappu tribal settlement at Munderi near  Nilambur in Kerala. A gentle patter of drizzle and rustle of leaves punctuate their laughter. Seated in an electric wheelchair, Rahul S parries playful taunts and smiles at them. He is very thin, a loose shirt masking his frail frame. His spindly fingers fidget around the pedal, occasionally running across the long strands that fall over his forehead. "I am growing my hair, looks good, right?"

His pals agree, ruffling his mop of wavy hair. In a tribal colony with 120 families, he is one of the first to be diagnosed with sickle cell anaemia, a genetic disorder inherited from parents. The National Health mission notes that this disease affects the whole life of an affected patient and it doesn't have a curative treatment. Rahul also suffers from muscular dystrophy, a condition which weakens his muscles and leads to progressive degeneration. He is not mindful of the complications. For him, it is mostly about pain and confinement.

The only way of escape was learning. He lost three years after he had collapsed in class 6. With the help of his teachers at Munderi Government High School, he continued his education. Studying in a house with two rooms and eight occupants, Rahul cleared SSLC and Class XII examinations. "I wanted to go to the classroom and study. My condition didn't allow me to do so. I was at home, teachers brought me books. During exams, they would be with me, helping with lessons. Now I want to move out, join a college in Kochi and study in a classroom. My friends tell me, it is fun. I want to study Politics. I wanted to learn or else I would be stuck here," says Rahul. At 20, he is one of the youngest voters in Nilambur where bypoll is on June 19. His family never skips their vote. "I will vote, please don't ask my politics, but I do vote," he says.

He stays with his two brothers, mother Radhika, grandparents and cousins in a brick-walled room in the colony. When monsoon gathers strength, Neerpuzha river swells and flows to their houses. A recent landslide brought with it giant boulders which are now scattered across the river blocking the flow of water. A new bridge connects the colony to the main road. His mother works as a maid in Palakkad and takes care of Rahul and brothers. The colony residents are beneficiaries of schemes meant for Particularly Vulnerable Tribal Group (PVTG). The scheme is meant for 75 PVTGs across the country.

Every evening, Rahul's electric wheelchair, gifted by the District Panchayat, whirs along the craggy path and across the bridge to the road. His friends walk by his side, chat with him and on balmy evenings, they go further up to the nearest junction. On the way, they watch children play football on waterlogged fields. Rahul is thankful to his teacher Ummu Habeeba Thannikal, who works at Munderi Government High School. She would visit his house, bring books, and sit with him to prepare for the examination. "He understands lessons very well, but he had some sort of learning difficulty. Also due to his condition, he writes slowly. I would ask him to write so that he can keep practising. He cleared both exams, availing a scribe," says Habeeba. Rahul completed his Class XII at Catholicate Higher Secondary School, Njettikulam. 

For the colony residents, he symbolises hope. He is often called 'vayyatha kochu' (unwell child), a term Rahul is not comfortable with. "I will apply for college soon. I still remember the day when I felt a pain in my legs while sitting in class and then I collapsed. Then I thought, everything was over for me. Learning has brought me this far," he says. Kavitha P N, ward member of Munderi says, the panchayat strives to ensure kids in the colony are educated. "Rahul shows promise. We have had students earlier who would produce good results but somehow they wouldn't go any further. We hope it will be different in his case," she says.