The schoolboy with a rare illness who has to run TRIATHLONS to stay alive

The schoolboy with a rare illness who has to run TRIATHLONS to stay alive

This little boy suffers from a rare condition that has him constantly fighting for his life – and doing triathlons?

Jake Vella has a deadly hormonal illness that makes him pile on the pounds despite maintaining a healthy diet and regularly exercising, he is only eight years-old. It doesn’t matter what he does, he will continue to get larger as a result of the condition – of which less than 100 people have ever been diagnosed. The saddest part is that doctors are unsure how long he has left to live as no sufferer has ever managed to survive into their 20s.

This condition can also lead to the development of certain tumors and in Jake’s case, it has caused one to grow on his back. In an effort to remain as healthy as possible and to try and fight the weight gain, he completes triathlons.

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Despite the skeptical looks he receives, he dreams of replicating the success of the Brownlee brothers, Team GB’s famous Olympic medalists.

His mother said: ‘Triathlons help Jake to keep fit and active. It’s good for his health and also gives him a chance to socialise with other kids. He leads a normal life, goes to school, plays the drums, but he has to be very careful not to get sick. We are frightened that a simple flu could lead to other complications. He trains with the Malta Youth Triathlon Association three times a week, and it really is like a second family to him. All the other young athletes and their families are so supportive of Jake, and they are the first ones to cheer him across the finish line. Now we have shared Jake’s story on social media, people from all over have come forward to say how he has touched their hearts. We are so overwhelmed.’

He was diagnosed with ROHHAD in 2015, which causes sufferers to experience rapid weight gain. ROHHAD stands for rapid-onset obesity with hypothalamic dysregulation, hypoventilation and autonomic dysregulation. This life-threatening condition affects the nervous system controlling involuntary actions.

People with ROHHAD can exhibit a wide range of symptoms which include slow heartbeat, excessive sweating, altered pupil response to light and also may be unable to maintain normal water balance in the body. Jake has a trainer working to help him stay as healthy as possible. He says that: ‘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 is very lovable and steals the heart of all who know him. It is sad and heart breaking 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. Jake was always included in the group and followed the same training and adapted as and when the need arises. Some alterations are necessary in order to meet his special needs such as having to stop and go to the bathroom or keeping an eye on his heart rate and ensuring he doesn’t get too hot. But I always tell him not to change, to keep going and to do his best. He is an inspiration for so many.’

Please pray for Jake that his doctors can find a way to help him or that he can be blessed with a miraculous extension of life.

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