It can be heart rending to see some children around the world affected by rare diseases that attack them through no fault of their own. Take Jake Vella for instance. Jake is only eight years old and afflicted by a hormonal disease that may not allow him to live beyond 20. What is even shocking is the fact that he still has to push himself to remain healthy all because his disease makes him put on weight and there’s no stopping it.
Despite his conditions, the Maltese boy with ROHHAD disease is a little champ who dreams of competing in triathlons and replicating the success of Great Britain’s Brownlee brothers.
Jake Vella from Malta is only eight years old. He is a school going kid who suffers from a rare disease called ROHHAD or rapid onset obesity with hypothalamic dysregulation, hypoventilation and autonomic dysregulation. He was diagnosed with the disease in 2015 and there is no cure for it. In fact it is a life threatening condition and although he may live to be 20, the average life expectancy is just 5 to 9 years old. Life is cruel as we know it and little Jake has been dealt the cruelest blow of them all.
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Today Jake is fighting for his life by competing in triathlons. He even trains with the Malta Youth Triathlon Association thrice a week and the organization is like a second family to him. As cruel as it may seem, Jake’s disease will pile on pounds despite him abiding by a healthy diet and even exercising. He will soon start getting larger because of the condition which till date has been diagnosed in only 100 people worldwide.
Even doctors are not sure how much time he has left as no sufferer of the disease as lived beyond 20.
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Jake even has a tumor on his back which is one of the symptoms of the disease. But what is so inspiring about this young fighter is the never give up attitude. The Maltese boy with Rohhad disease is the little rocky of the real world. Jake competes in triathlons just to fight the obesity and stay as healthy as possible. According to his mother Maruska, '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. We are frightened that a simple flu could lead to other complications.
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Every person in Jakes hometown is supportive of the little guy. They cheer him on when he crosses the finish line. While readers of such websites may seem judgmental on carrying such heart breaking stories, one needs to generate awareness and making the world a witness to the life of a little boy who will soon succumb to his disease.
Even his family feels that '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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Jakes disease affects the nervous system that controls involuntary actions; it can cause a variety of life threatening symptoms such as excessive sweating, slow heartbeat, pupil sensitivity to light and abnormal water balance in the body. But!! Despite such conditions. Jake’s trainer Matt Azzorpardi said '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 is an inspiration for so many.'
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I wanted our readers to know about Jake the Maltese boy with Rohhad disease. He is an inspiration and teaches us a huge lesson about life. While we have many years ahead of us, we complain, rant and ramble how life is unfair. Some of us even wish to end it. And then again we have little Jake, without life, he is living to the fullest making the most of what little time he has left because the lovable little guy that he is, he doesn’t really have much time to complain now does he?
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