A 7-year-old boy is bravely battling rare ROHHADS syndrome in Sydney, Australia.
For the first five years of his life, Sebastian Aguiar was a healthy, happy boy who enjoyed playing with his friends. He led a normal childhood life.
Sebastian, 7, now weighs three-times what he did two years ago, a reported 154 pounds, and it was not caused by overeating or lack of exercise.
Sebastian suffers from Rapid-Onset Obesity with Hypathalamic Dysfunction, Hypoventilation, and Auto-Nomic Dysregulation (ROHHADS).
One in 75 people in the world suffer from the possibly fatal but rare condition.
ROHHADS affects the ability to breathe, impacts the body’s temperature, heart rate, and blood pressure. It also causes rapid weight gain.
"It's been a nightmare. A nightmare. I have days when I want to cry and scream because of what I see him go through,” his mother Luisa Aguiar said.
Sebastian stops bringing unexpectedly and requires the use of a tracheotomy tube in his throat. He sleeps with a ventilator every night.
His constant tiredness keeps him from being able to enjoy his favorite toys and he has asked his mother to put them away.
Sebastian takes medication to keep him awake during the day and another to fall asleep at night. He now suffers from depression as his childhood has been taken from him by ROHHADS.
“He says to me ‘Why me Mummy? What did I do to deserve this?,” Aguiar told The Daily Mail. “He doesn't like having photos taken - when he brushes his teeth he closes his eyes so he doesn't have to see himself."
ROHHADS is not a curable syndrome, it is only treatable.
A restrictive diet of 1,000 calories per day has helped keep Sebastian’s weight stable since February 2014.
Sebastian is still able to attend school and it is one of his life’s joys.
“It's the only thing that makes him happy - it gives him a purpose in life,” Aguiar said.
It was the Chicago hospital that suggested to Sebastian’s doctor he may have ROHHADS syndrome after sending information on the disease.
“Kids pass away from it which is quite scary but we just have to stay positive and stay on top of the disease,” Aguiar said.
“I’m hoping and praying we can raise the money because I received an email saying the tests will cost up to $200,000,” Aguiar continued.
Currently, just over $28,700 has been raised; 29% of the needed $100,000.
Photo Source: Luisa Aguiar/The Daily Mail