Updated 6.30pm

Inspirational teenage athlete Jake Vella, who suffered from a rare condition, died on Friday, aged 15.

For most of his life, Jake had been fighting an extremely rare condition that caused him to gain weight rapidly despite eating healthy and training continuously.

His condition took a turn for the worse over the past few days and he died at Mater Dei Hospital, where he had recently been living and receiving treatment.

His parents Josie and Maruska thanked their family, friends and medical staff, doctors and all nurses who were part of Jake's difficult journey, most especially the Disneyland ward, which was Jake's home for the last 22 months and the ITU ward, where Jake fought his last battles.

"Lastly, we would like to thank the public for the constant support that they have shown us. 

"Jake has taught us what life is all about, and he will forever live in the hearts of many. We have no words for the bravery he has shown throughout these years," they said.

Inclusion Minister Julia Farrugia Portelli announced his death on Friday morning and paid tribute to Vella's aspirational attitude towards life. 

"We lost a boy who inspired a lot of people. You will remain in our hearts always," she said. 

Vella became a beloved, renowned face when he went public with his condition and began documenting his constant fight with the disease while remaining positive and full of energy and determination.

His neurological condition, known as Rapid-onset Obesity with Hypothalamic Dysfunction, Hypoventilation, and Autonomic Dysregulation (ROHHAD), affects mostly children and there are only around 100 confirmed cases of it worldwide.

The exact cause of ROHHAD remains unknown and research on it is inconclusive.

Jake had been living and receiving treatment in hospital. Photo: Facebook / Josie Vella

It could be caused by a combination of genetic and environmental factors, but no specific gene has been definitively linked to the condition yet.

Although immensely painful and uncomfortable, the condition did not dampen the young man’s spirits.

Vella not only soldiered on but also turned into a philanthropist, organising swimming challenges and sports events with other athletes to raise funds and awareness for abandoned animals and other causes.

He worked especially closely with the wife of the Prime Minister, Lydia Abela. The two ran a Christmas campaign, called Rigal bi mħabba b'differenza, urging hospital visitors to donate foodstuffs for abandoned animals.

Young Jake Vella, before he was diagnosed.

Vella had also started to learn boxing and playing the drums, guitar and the piano.

His relentless efforts won him awards for being an inspirational athlete and animal rights activist, and last May he broke the national record for youngest person to swim 100 kilometres in a pool.

'Suddenly he began gaining weight rapidly'

His last public appearance was earlier this month during a live telethon that was raising funds for Inspire. Vella joined via video call from the hospital to urge people to donate funds for the organisation which helps people with disability.

In a clip aired during that telethon, his parents, Josie and Maruska said there were no signs of the condition when he was born. He was cheerful and went to school normally.

“Then all of a sudden he began to gain weight rapidly,” Maruska, said. “When he was just four or five, in a few months he went from weighing 17 kilograms to 27 kilograms, and multiple tests and MRIs would not explain what was going on.”

Eventually, they were told he was diagnosed with ROHHAD, following which he spent years trying everything he could to lose weight, all the while struggling with the symptoms.

The situation took a turn for the worse two years ago when Maruska was diagnosed with cancer.

“There was a period when I was afraid I was going to lose them both,” Josie said.

Malta reacts

News of Vella’s death triggered an outpouring of grief and tributes to the teen and his inspiring outlook on life. 

Both Prime Minister Robert Abela and his wife Lydia expressed sadness at the loss. 

“Jake left an impact on many people. He always thought about others more than he sought out help for himself,” Robert said in a Facebook post. 

“The dreams that he had and shared with Lydia, Giorgia and many other families led to beautiful initiatives and for this, we thank him from the bottom of our hearts."

Lydia meanwhile recalled how Jake never pitied himself despite the huge challenges he faced.

Instead, he strived to improve the situation of others, including the voiceless, such as animals, she added.

European Parliament President Roberta Metsola referred to Jake as a hero who inspired whole generations.

"Thank you, Jake. Despite the challenges you faced, you never gave up.

"As I told you the last time we met, Malta and Gozo are proud of your legacy."

Paying tribute, Opposition leader Bernard Grech said the teenager will be remembered for his bravery courage and beautiful laugh.

"Despite the several obstacles and challenges, you never gave up and always made sure to help others.

"Your love for swimming and sport inspired many. The whole country admired you and followed your accomplishments with love."