Seven-year old Jake Vella from Malta is a triathlete and an unfortunate carrier of the ROHHAD disease.
Namely, Rapid-onset obesity with hypothalamic dysfunction, hypoventilation, and autonomic dysregulation (ROHHAD) is a rare disorder of respiratory control and autonomic nervous system (ANS) regulation, with endocrine system abnormalities.
The problem with this disease is that it presents itself after a year and a half has passed, and the child experiences a rapid weight gain, 30 pounds in 6 to 12 months.
There are reportedly only 75 cases of people with the disease at the moment and it’s debatable whether they’ll live to see life past their twenties.
However hard and bleak it might look, this boy does not sit around and despair. Actually, his becoming a triathlete at his young age was prompted due to the disease.
Physical activities have helped him a lot.
“We live day-by-day, and try to as much as possible make sure that he leads a normal life,” Jake’s mother Marouska Vella told the Independent.
“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,” she told the newspaper.
Jake trains three times a week with the Malta Youth Triathlon Association.
His first trainer, Matt Azzopardi, said that Jake “is extremely positive and motivated and easily the most dedicated.”
“He never misses a training session without a valid reason and is constantly eager to train,” added Mr. Azzopardi.
Some alterations needed to be made in the exercises to fit the needs and special circumstances that had arose because of the disease. However, Jake is always on top of the situation.
His dream is to one day meet the triathlete brothers Alister and Jonny Brownlee. However, this is a far stretch since his condition prevents him from travelling.
A local businessman felt touched by the story and vouched to help young Jake to fulfill his dream!
“His dream is not something impossible, so I am trying to work on it, together with some other people, and hopefully [the Brownlee brothers] do come,” said Hugo Chetcuti.