Child suffering from rare illness can't stop gaining weight

Can you imagine living a completely healthy life and still gaining weight? This is the nightmare that Jake Vella, an eight-year-old boy from Malta, is living. In 2015, when he was only six years old, his body underwent a shocking transformation: in only six months he gained over 20 lbs despite maintaining a normal diet. What was happening?

His parents tried everything — making sure Jake ate a healthy diet and got lots of exercise — but instead of losing weight, he continued to get heavier. That was until Marouska, his mother, read a story on the internet about a girl with a similar problem. She had a strange hormonal disease called ROHHAD, and the symptoms matched perfectly with what little Jake was experiencing. A short time later, the doctors confirmed the diagnosis.

Obesity with rapid progression, hypothalamic dysfunction, hypoventilation and autonomic dysregulation (ROHHAD) is a rare condition, with only around 100 diagnosed cases to date. Currently, only 75 people suffer from it. It affects the part of the nervous system in charge of controlling the endocrine system and involuntary actions, and causes uncontrollable weight gain and an inability to control body temperature. Sufferers also tend to have a very low heart rate and difficulty breathing.

Sadly, it is a disease that until now has no cure and has proven to be fatal. There are no diagnosed individuals who have survived beyond their 20s. In addition, it causes the development of tumors in the body, and Jake has already had one in his back. The diagnosis dealt the family a heavy blow, but they were determined to do whatever it took to keep Jake alive.

And what has Jake been doing? Running triathlons, of course! That's right: Jake trains hard three times a week and maintains a strict and healthy diet. "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. 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," explained his mother.

Jake is definitely one tough little guy, and his coach sums it up like this: "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 heartbreaking to see what he has to go through."

Recently, a video of Jake's story went viral and led to him meeting his idols, the Brownlee brothers. These famous British triathletes saw the campaign and sent him a T-Shirt that they had worn during a competition. And later on, they even took the time to have a direct conversation with him!

Because Jake's illness doesn't allow him to travel, the meeting was held on Skype. But that was good enough for Jake who was overjoyed. He was able to talk to his idols and ask them all sorts of questions about triathlons.

It's the small things like this that make Jake's life a bit easier. An average day for him is a real struggle, but thanks to his loving family he's living a very full life despite his illness. Jake is determined to survive, and as long as his little legs carry him, he'll keep running for his life!


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