Two years ago, Jake Vella (Malta) was diagnosed with a rare disease - ROHHAD syndrome. Now heavy physical exertion and a tough healthy diet have become real medicines for him.
A similar hormonal failure was diagnosed in less than 100 people worldwide. Doctors do not know how much time Jake has, since none of these patients have been able to live longer than 20 years.
This disease can also trigger the development of tumors on the human body. At eight, Jake, they appeared on his back.
The stubborn baby is well aware of his prospects, but in order to stay as healthy as possible and try to resist weight gain, he takes part in a triathlon.
“Triathlon helps Jake keep fit and keep fit. It is good for his health and also gives him a chance to communicate with other children.
He leads a normal life, goes to school, plays drums, but he must be very careful not to pick up any infection. Even the simplest flu can lead to severe complications.
He trains three times a week with the Maltese Association of Young Triathletes, which has become his second family, ”- Maruska, Jake's mom.
Surrounding people do not know what a terrible disease a boy suffers from, and often let go of the wicked comments about his weight and parents who are inattentive to the child’s food. But Jake pays no attention to them.
The boy's coach, Matt Azzopardi, talks about him as a very stubborn man who completely devotes himself to his goal.
“Jake is a very cute and positive kid who has more strength than many professional athletes. He is really loved and loved by everyone. It is very hard to watch him go.
His parents are doing everything possible, and even impossible, for the boy to live a full life, ”- Matt Azzopardi.
ROHCAD Syndrome is a very rare disease that has affected about 76 people worldwide. It is a sudden obesity caused by dysfunction of the hypothalamus, pulmonary hypoventilation, and autonomic dysregulation.
The disease affects a part of the nervous system that controls autonomous actions like breathing and the endocrine system. Scientists suspect that the disorder is genetic, but there is no evidence of this.
The disease is incredibly rare, it is accompanied by symptoms such as a sharp weight gain in a short period (6-12 months), inability to maintain normal water balance in the body and regulate body temperature, slow heartbeat and excessive sweating, as well as difficulty breathing during sleep .
The average life expectancy of patients with this disease is from 5 to 9 years. There is no cure.