Malta Boy with ROHHAD Runs for His Life

Chucky Bartolo of Lovin’ Malta introduced Jake Vella to the world yesterday. Jake suffers from the rare disease ROHHAD.

While he was a regular kid for the first five years of his life, he gained 22 lbs in just six months. They put him on a strict diet but he kept gaining weight. His parents found a story of a young girl suffering from ROHHAD and soon starting suspecting that Jake was suffering from the same condition.

ROHHAD is incredibly rare, with only 75 cases known worldwide. The cause of ROHHAD is unknown, though some think there could be a genetic component to it. There is no cure for ROHHAD and treatment varies depending on the particular patient’s case. Typically, patients do not survive past their twenties. But Jake’s family believes his active lifestyle, like his father’s, will help him to live longer.

Currently, Jake is running triathlons and hopes to meet the triathlon-running brothers Alistair and Johnny Brownlee of the UK. His parents hope to continue promoting Jake’s physical sport and help extend life through exercise and training.

Jessica Gladwell

Jessica Gladwell

Jessica Gladwell is one of PW's consultants and patient editors. She has lived with late-stage, chronic Lyme and POTS since circa 2002. She has also served as a caregiver to close family members with late-stage, chronic Lyme. Before diagnosis, she served as a business consultant for a large corporation and PM for a small digital branding agency. Now, she is proactive in the rare and neurological disease community, spreading awareness and advising on matters of health and lifestyle when living with a chronic illness.

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