Sebastians fight for life

Sebastian Aguiar is only 8 years old and has been diagnosed as the only child in Australia to suffer from ROHHAD Syndrome.

Sebastian began to gain weight at about five years of age and after 2 years and many doctor’s appointments, tests, scans, MRI’s and blood tests, the devastating diagnosis of ROHHAD (Rapid-onset obesity with hypothalamic dysfunction, hypoventilation, and autonomic dysregulation syndrome) was made. This extremely rare disorder has less than 76 cases worldwide. ROHHAD affects respiratory control and autonomic nervous system regulation, with endocrine system abnormalities, which in turn affects the portion of the nervous system that controls or regulates body functions; including heart rate, blood pressure,moods,appetite, body temperature,bowel and bladder control. The endocrine system is regulated by the hypothalamus and through hormones it controls growth, appetite, energy and water balance, as well as response to stress.

Sadly at 8 years old Sebastian is now permanently tracheostomised and is requiring 24 hours ventilation support.

Because of his life saving equipment, a 7 seater car is now a big necessity, unfortunately the family can't travel together anywhere without it.

Living with ROHHAD is an uphill battle coping with the costs, physical demands and the emotional toll this illness had taken on the family.

We, the school community and local community are appealing to you for help or support in any way possible. This family desperately needs some financial help to cope with daily expenses, exacerbated by his mum having to give up work after the diagnosis. Their home is also in need of work, ideally an extension that will better allow Sebastian to move about, be bathed and eventually toileted as his condition progressively deteriorates. He would also very much benefit from a larger bedroom in which he can fit the lifesaving equipment he needs to survive each and every night. His mother sleeps in the same cramped room and wakes every three –four hours to suction his tracheostomy cannula to prevent him choking. This need increases after bouts of chemotherapy to try and curtail the disease.

The family are grieving the loss of the child that Sebastian was and are finding it almost impossible to live their reality every day.

Any help would be appreciated and so well deserved. They are beautiful people who have had their lives turned upside down, and because so little is known about this rare disease, there is very little practical assistance readily available.
If you are able to offer any hope or assistance in giving Sebastian and his family a little more ‘quality of life’, we ask that you consider donating to make a difference. The attached photos show Sebastian before and after the onset of ROHHAD over a period of just three years.