CHENNAI: It’s not about a mug that has a ‘Best Dad in the World’ printed or a T-shirt that reads ‘I Love My Father’. For most fathers around the world, what they wish for is their child’s happiness. But enough of gifts, words and one-day loving. Let’s talk about those men who give special care and attention to their child — a child so wrecked with a rare disease that sometimes you can’t even pronounce the name. For which their dads had to quit their full-time jobs to care for them.
City Express asked four dads in the city to take a few minutes to talk not only about June 19 but about their relationship with their child and the challenges they face.
Mucopolysaccharidosis type II (MPS II), also known as Hunter Syndrome, is a condition that affects different parts of the body and leads to sensory problems like hearing loss. While the father and son may not be able to play a game of ball together, they find more happiness in small moments.
“When I am at office, almost 13 hours a day, my son Prince calls me three times each day without fail and asking — Have you taken your breakfast? What did you eat, did you have lunch? If no, why not? Why are you so late and did you take your evening tea?” recalls Manjit Singh, president, Lysosomal Storage Disorders Support Society (LSDSS), an NGO of parents of rare & fatal diseases. He lost his other son due to respiratory failure.
Another member of LSDSS is J Karunakaran, whose daughter has Mucopolysaccharidosis type-VI (MPS VI), also known as Maroteaux-Lamy syndrome, a condition that causes tissues and organs to enlarge, inflame or get scarred. When he speaks about his daughter, he cannot help but be proud of his daughter. “Despite everything, she is highly academic. Always studying, preparing — she scores really well too. We spend all our time together except after I drop her in college and pick her up from there. But I’m happy,” he smiles.
Humour can be a gift to tackle these problems. Sometimes when Manjit asks his son for a gift, the ever-smiling Prince would say, “How can get you one since I cannot walk properly, nor do I know any shop close by?”
On the other hand, some children may feel guilty about the rapid and unpredictable incidents that begin to take shape in the family. Iftikhar Md Zia, father of 22-year-old Zoyeb who is diagnosed with a rare neuro-degenerative disorder termed spino cerebellar ataxia. This affects the coordination of the limbs. He gave up his job in the garment industry and also shut his business to take care of his son. “It is hard to quantify the challenges faced, but one begins to see things in a different perspective. And when your son understands that he could be a cause for the changes in his parents’ life, the most difficult part is convincing him that it is not the case,” says Iftikhar.
This Father’s Day, think beyond your heart-shaped embellishments. Give your daddy a hug and tell him how lucky you are to be his son or daughter.