Most triathletes train to push themselves and test their limits. Surviving to their next birthday probably isn’t very high on their list as far a reason goes for taking on the challenging race. Then again, most triathletes aren’t an 8-year-old living with ROHHAD (rapid-onset obesity with hypothalamic dysregulation, hypoventilation and autonomic dysregulation) which is an incredibly rare disease – less than 100 people are currently diagnosed – with a life expectancy of five and nine years.
For Jake Vella, 8, triathlons are a way of life that allow him to fight his disease and the odds by extending his life by being as active as humanly possible. Originally diagnosed in 2015, unless a cure is found, Jake will continue to add on weight no matter how healthy he eats or how many triathlons he completes.
“Triathlons help Jake to keep fit and active,” says Maruska, Jakes mother. “It’s good for his health and also gives him a chance to socialise with other kids.”
No one is sure how much longer he has left, but Jake is going to keep battling the odds as long as he can. No one suffering from ROHHAD has made it into their 20’s.
In this world, Jake obviously has to deal with looks of judgement everyday. Many of those people will never know just how much work he puts in just to have a life.
“He leads a normal life, goes to school, plays the drums, but he has to be very careful not to get sick,” his mother says. “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.”
Signs of ROHHAD include dramatic weight gain over the course of six to 12 months, inability to maintain normal body water balance and a slow heartbeat and excessive sweating. The nature of this disease requires a team of healthcare professionals to adequately care for those affected by it.
“He is extremely positive and motivated and easily the most dedicated,” says Jake’s trainer Matt Azzopardi. “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.”
He may have needs that others in his group didn’t, but that didn’t mean he slacked off any when it came to putting in hard work. It’s incredible to see the hard work this young man has put in and the goals he continues to strive for.
“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.”