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Due to constant hunger, Aryan Vijay Kumar, a 15-year-old boy from Bangalore, conjures up stories to hide his food stash from his parents. He is living with Prader-Willi syndrome, a rare genetic disorder that affects one’s physical and mental well-being. Its primary manifestations include behavioral issues and increased appetite, which can contribute to weight gain and obesity.

Aryan’s parents, Vijay Kumar SJ and Josephine Esther Rani, constantly monitor his diet, ensuring portion control. Whenever a vegetable or fruit goes missing from the fridge or kitchen, they know exactly where to look for it. “He eats raw vegetables, frozen foods and even dough; he hoards them in his gym bag and eats them when we are not around. When confronted, he says he was collecting the items to make a sandwich for us,” says Kumar, laughing. Wise to his tricks, they leave no stone unturned to help their only child deal with the condition.

Understanding Prader-Willi syndrome

Children with Prader-Willi syndrome are constantly hungry and never get full despite eating large portions of food. “The condition is caused by a defect in chromosome 15, affecting hunger, growth, sexual development, mood and sleep,” says Dr Meenakshi Bhat, senior faculty at the Center for Human Genetics, Bangalore, who’s treating Aryan. “Uncontrolled eating makes them gain weight, increasing the risk of type 2 diabetes, high blood pressure, high cholesterol levels and sleep apnea.”

Aryan’s parents often have to adopt strict measures to keep food away from him. “We lock the kitchen and fridge doors to ensure he doesn’t overeat,” shares Rani. He is currently undergoing growth hormone therapy; this improves muscle tone, helps manage body fat and facilitates growth.

Diagnosis of Prader-Willi syndrome

By the time Aryan was nine months old, his parents knew that something was not right. “He was gaining a lot of weight and had a floppy body. We were concerned. Our pediatrician asked us to limit his food intake. We also noticed a delay in his developmental milestones, such as speech, motor skills and walking ability. He was diagnosed with Prader-Willi syndrome at the age of four,” says Kumar.

Recalling the situation, Rani says, “Initially, we were unaware of his condition. We would feed him more, which made him gain 25 kilos at four years of age. Cutting down on food was just not enough; hence, we introduced walking, running and other physical activities to his daily routine.”

Difficulty maintaining portion control

Complaining about his parents, who don’t give him enough snacks to satisfy his hunger, Aryan says, “My mom gives me smaller portions of meat while Appa gets bigger portions.” He’s currently 85 kilos and has been advised to exercise portion control to reduce his weight.

While it’s difficult for Aryan to eat in moderation, his parents ensure he burns all the fat to compensate for it. Compared to other kids living with this condition, Aryan luckily doesn’t have any other comorbidities. He has enrolled in open schooling, and his parents help him with his studies.

Ensuring regular exercise

Despite their busy schedules, Aryan’s parents work out with him every day to manage his weight and keep him healthy. “I wake up early and go to the gym with my father. I enjoy running, weightlifting, CrossFit, dumbbell exercises, Zumba, swimming and dance,” shares Aryan. In addition to working out two hours in the morning, he also goes for evening walks with his mother every day for the same amount of time. Further, she also accompanies him to yoga twice a week.

To ensure Aryan’s fitness, Kumar has taken up a special course in fitness training. He aims to work as a fitness trainer for special children. “Apart from having multiple comorbidities, these kids also have different diets. A tailored exercise routine is crucial to helping them. Several children, like my son, need help staying fit and healthy. I want to create a space where they can come together and enjoy the process,” he says.

Embracing social interaction

While children with rare conditions are often socially inhibited, Aryan is an exception. Initially denying having any friends, he is quick to recall his bonding with the security guards at his apartment, his gym trainers and his father’s colleagues. “He is very curious and loves to talk to people. He can strike up a conversation with anyone except kids his age,” says Kumar.

“I try to speak to kids my age, but they walk away from me. Some ask me to get my toys but play without me. If I’m walking towards them, they all run away,” laments Aryan.

However, elaborating on his inclination to interact with people, Kumar shares, “All his friends are older or younger than him, with whom he finds it easier to connect. Every time he steps out to play with the children, he ends up having conversations with their parents.”

Motivating each other

The trio motivate each other to work out daily. If Rani misses yoga class, she accompanies Aryan, watching him perform. The same is true for Aryan. “Some days, he refuses to work out. But the minute he sees me or his father exercising, he gets jealous and joins us,” says Rani.

Aryan has a positive outlook about his condition and takes challenges head-on. “We learn something new from him every day. He focuses on things that make him happy and enjoys spending time with us,” his parents share.