Rare disease forces 7 year old to compete in triathlons
04/17/2017 / By Amy Goodrich
No matter what Jake Vella does, the 7-year-old boy from Malta continues to get larger as a result of a rare life-threatening condition that affects the automatic nervous and endocrine system. He suffers from rapid-onset obesity with hypothalamic dysregulation hypoventilation and autonomic dysregulation, known as ROHHAD, a condition of which less than 100 people have ever been diagnosed. None of them lived far beyond their 20s, but Jake is determined to do everything in his power to combat the deadly symptoms by competing in triathlons.
Jake was diagnosed with ROHHAD in 2015. According to the National Institutes of Health, most kids with ROHHAD start to develop symptoms within the first ten years of their life. Symptoms include dramatic weight gain, shallow breathing during sleep, slow heartbeat, and growth hormone deficiency.
After a video, which has been seen over five million times, was published on the Lovin Malta Facebook page, Jake’s story touched the hearts of many people around the world, raising awareness of this very rare disease.
https://www.facebook.com/LovinMalta/videos/1935630793326739/
Jake was a healthy and extremely active five-year-old when he suddenly started feeling ravenous all the time. In just six months he gained 20 pounds, which prompted his parents to put Jake on a strict diet of salads and an exercise regime. When he still continued to gain massive amounts of weight, his parents knew that something was not right.
After his mother Maruska fanatically searched for similar cases to find out what was wrong with her boy, she stumbled on a story of a girl who suffered from an extremely rare condition called ROHHAD. After reading up on the condition, she got the sinking feeling that Jake was showing the early symptoms of the same disease.
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“After multiple checkups and visits to medical specialists, my husband and I were called in for a diagnosis update. As soon as the doctor started writing ‘R’, ‘O’, my heart skipped a beat; I knew exactly what was coming next,” his mother told Lovin Malta.
Run, swim, and cycle for life
As reported by Lovin Malta, there are only 75 known cases of ROHHAD worldwide. About 25 percent of children with this rare condition die from respiratory failure. The longest-living survivor of this incurable and life-threatening disease was 22 years old when she died. Nearly half of the individuals with ROHHAD also develop neural tumors. Jake, unfortunately, is part of the 40 percent that suffers from the more advanced level of this mysterious disease, called ROHHAD-NET.
But this isn’t stopping this very brave boy and his family from trying to combat the condition with everything they’ve got. The triathlons keep him fit and active and allow him to socially interact with other kids. What hurts the family the most are the looks they often get. Even though they are an active, healthy family, Maruska and her husband Josie are often judged as irresponsible parents with an obese child.
“If you see someone who is obese, or looks different, you have no way of knowing whether he has any sort of condition, even if it isn’t one as rare as my son’s. So please; don’t keep staring, because you’ll keep hurting us.”
According to his mom, Jake has always been a very active boy who loves to cycle, run, swim, and play the drums. Now seven years old, Jake runs triathlons to combat his life-threatening condition. While they don’t dare to plan for the future, living their lives day-by-day, Jake’s parents said that their son’s lifestyle and a healthy diet are definitely helping him fight this condition. (RELATED: Learn how to improve your health through the power of food at Ingredients.news.)
His mother explained that some kids with ROHHAD that are younger than Jake are kept on air support on a 24-hour basis. “We’re grateful we have a son who loves being so active… because it might just be saving him,” she added.
In a recent interview, Jake’s parents told Lovin Malta that one of Jake’s biggest dreams was to meet the Olympic triathlete brothers, Alistair and Jonny Brownlee from England. On March 31, his dream came true during a 30 minute Skype chat with his heroes. Just as Jake has inspired thousands of people with his courage and joyful look on life, the famous Brownlee brothers were also touched by his story and granted his wish.
Video credits: Lovin Malta Facebook page.
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Tagged Under: exercise, health, rare disease, ROHHAD, triathlons, weight gain
