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7-Year-Old Boy Suffering from Rare Condition Runs Triathlons to Stay Alive

Jake Vella suffers from a rare hormonal condition that causes him to rapidly gain weight despite eating healthy and doing regular exercise. There is nothing anyone can do to stop the weight gain, but in order to stop the process and stay alive, the 7-year-old boy competes in triathlons.

Jake’s parents first noticed there was something wrong with him three years ago, when he gained about 20 pounds in just six months. He kept putting on weight despite eating only salad. In 2015, Jake was diagnosed with ROHHAD (Rapid-onset Obesity with Hypothalamic dysfunction, Hypoventilation and Autonomic Dysregulation), a rare condition that affects the nervous system and causes rapid weight gain, as well as an inability to regulate body temperature and maintain normal water levels. It can cause tumors to develop, and Jake already has one on his back. Unfortunately, the condition is currently incurable and the life expectancy of sufferers ranges between 5 and 9 years.

Photo: LovinMalta

But the young boy from Malta wants to fight for his life. Although there is no known way to fully stop the weight gain, he does everything he can to slow it down, including regularly competing in triathlons. “Triathlons help Jake to keep fit and active. It’s good for his health and also gives him a chance to socialize with other kids,” his mother, Maruska, said. “He trains with the Malta Youth Triathlon Association three times a week, and it really is like a second family to him.”

“He is extremely positive and motivated and easily the most dedicated. He never misses a training session without valid reason and is constantly eager to train,” Jake’s trainer, Matt Azzopardi, said. “Jake is very lovable and steals the heart of all who know him. It is sad and heartbreaking to see what he has to go through. I look at his family with a mixture of sympathy and admiration – despite the hardship they do their utmost to ensure that Jake gets as normal a life as possible.”

Photo: LovinMalta

Everybody is more than happy to help Jake, and they gladly change event dates and training schedules just to make it easier for him to attend. He is always very determined, but due to his condition, he can’t allow himself to get carried away. He can’t allow himself to get too hot, or push his heart rate too high. “I always tell him not to change, to keep going and to do his best. He is an inspiration for so many,” Azzopardi said.

Jake Vella’s dream is to meet Alistairt and Jonny Brownlee, the two brothers who represented Britain in the Triathlon World Series last year, but due to his ROHHAD, he cannot travel.

Photo: LovinMalta

After Jake’s story was made public by LovinMalta, Maltese entrepreneur Hugo Chetcuti announced that he will do everything he can to make the boy’s dream a reality. “His dream is not something impossible, so I am trying to work on it, together with some other people, and hopefully they do come. In Malta everyone helps everyone, all year round, so I just want to do my part,” he said.

Only 75 cases of ROHHAD have ever been reported, and none of the sufferers is known to have lived past their twenties.

Maruska Vella told the Malta Independent that she and her husband get judgmental looks all the time, but she wanted to share her son’s story to let people know that being overweight is not always caused by an unhealthy lifestyle. “We decided to speak about it because we wanted to raise awareness,” she said. “The media is always telling you to eat well and do exercise, and it’s like you’re doing something bad. We wanted to share Jake’s story to raise awareness that obesity can be hormonal.”