Sebastian Aguiar, aged 8, is suffering a disease so rare that he is the only person in Australia with ROHHAD (Rapid-onset Obesity with Hypothalamic dysfunction, Hypoventilation and Autonomic Dysregulation) syndrome.
John the Baptist Catholic Primary Principal, Tony Lo Cascio, said Sebastian’s condition continues to pose a great challenge.
“He loves coming to school but has suffered a few infections that have seen him hospitalised,”
“We are committed to having him here whenever possible but the complexities of the condition and the levels of care needed sometimes dictate to the contrary,” Mr Lo Cascio said.
Sebastian has been to school on a regular basis but has had intermittent hospital stays.
He now has a permanent tracheostomy tube embedded in his throat because his condition means he could stop breathing at any time and he is on a ventilator.
ROHHAD affects respiratory control and autonomic nervous system regulation, which in turn affects the portion of the nervous system that controls or regulates body functions including heart rate, blood pressure, temperature, adrenals, thyroid functioning and bowel and bladder control. When Sebastian was five, he began to gain rapid weight, which tripled in less than two years.
There is no cure for Sebastian’s illness and there are only about 100 cases of ROHHAD syndrome reported in the world.