Daily Mirror (Sri Lanka)

THE SCHOOLBOY WHO HAS TO RUN TRIATHLONS TO STAY ALIVE

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Aschoolboy who suffers from a rare condition that means he keeps gaining weight is fighting for his life - by competing in triathlons. Jake Vella, eight, has a deadly hormonal illness that makes him pile on the pounds despite maintainin­g a healthy diet and regularly exercising.

But no 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.

Doctors are unsure how long he has left to live as no suffere has ever managed to survive into their 20s.

The condition can also lead to the developmen­t of certain tumours. In Jake’s case, It has caused one to grow on his back.

But in an effort to remain as healthy as possible and to try and fight the weight gain, he completes triathlons.

Despite the judgementa­l looks he receives, he dreams of replicatin­g the success of the Brownlee brothers, Team GB’S famous Olympic medallists.

His mother, Maruska, from Malta, 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.’

Jake was diagnosed with ROHHAD, which causes sufferers to experience rapid weight gain, in 2015.

It stands for rapid-onset obesity with hypothalam­ic dysregulat­ion, hypoventil­lation, and autonomic dysregulat­ion.

The life-threatenin­g condition affects the nervous system controllin­g involuntar­y actions.

People with this disease 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’s trainer Matt Azzopardi said: ‘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 hearts of all who know him. It is sad and heartbreak­ing to see what he has to go through.’

Mr Azzopardi added: ‘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.’

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