REAL LIFE

Boy, 8, has rare illness that forces him to run triathlons to survive

He's one of only 100 people with this condition.

A boy suffering from an extremely rare genetic illness runs triathlons to stay healthy because his condition makes it impossible for him to not put on weight. 

Jake Vella, from Malta, suffers from a condition called ROHHAD – which is a hormonal imbalance that makes it impossible for Jake to not gain weight. 

‘He leads a normal life, goes to school, plays the drums, but he has to be very careful not to get sick and we are frightened that a simple flu could lead to other complications,’ his mother Maruksa Vella says, reports The Mirror. She and Jake’s father, Josue, met on the triathlon circuit. 

‘He trains with the Malta Youth Triathlon Association three times a week, and it really is like a second family to him.

‘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.’

ROHHAD stands for rapid-onset obesity with hypothalamic dysregulation, hypoventilation, and autonomic dysregulation. As well as weight gain, people with this condition can develop tumours, involuntary movements, water retention, excessive sweating, and slow heartbeat.

Jake’s trainer, Matt Azzopardi, describes the 8-year-old athlete as a charmer.

‘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,’ he said, according to Daily Mail.

‘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.’

It’s hard to know how the disease will continue to affect Jake since fewer than 100 people have ever been diagnosed – and not one of them has lived past 30 years old. 

His mother says she and Jake’s father are touched by the warm response from their community. 

‘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.’

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