Sebastian's Fight For Life
· This is Sebastian, and he is suffering from a rare and terminal condition called ROHHAD.
· ROHHAD syndrome is incurable
Rapid-onset obesity with hypothalamic dysfunction, hypoventilation, and autonomic dysregulation (ROHHAD) is a rare and complex pediatric syndrome, essentially caused by dysfunction of 3 vital systems regulating endocrine, respiratory, and autonomic nervous system functioning.
· It affects breathing, body temperature, heart rate and blood pressure, emotions, appetite, hormones
· There are approximately 100 people around the world with this condition.
· Medical research into ROHHAD is very limited, and more research is required.
· This fundraising page has been set up to alleviate the financial stress that the Aguiar family is going through, and in particular to purchase a People Mover with modifications for wheel chair access (e.g. Toyota Tarago).
Sebastian sits home, clinically depressed because we are unable to get him in the family car with his electric wheelchair and the life support equipment he needs to travel.
He desperately needs to experience life outside hospital and home, his condition has progress so dramatically, his specialist have said we need to concetrate on his quality of life and keep him comfartable, we have tried our best.
· We ask that you share this with your friends to help raise awareness of Sebastian condition, and need for assistance and give Sebastian the chance to enjoy whatever he has left.
· We thank you so much for your support.
Sebastian Aguiar is 11 years old and has been diagnosed as the only child in Australia to suffer from ROHHAD Syndrome.
Sebastian began to gain weight rapidly at 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 approximately 100 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 11 years of age, Sebastian is now permanently tracheostomised , requires 24 hours ventilation support, cannot swallow safely,
Living with ROHHAD is an uphill battle coping with the costs, physical demands and the emotional toll this illness has 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, 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.
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.
Your support will help with the following:
· Purchase a People Mover with wheelchair access and modifications (e.g. Toyota Tarago).
· 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.
Learn more about ROHHAD
National Organization for Rare Disorders (NORD)
Sebastian in the News
Daily Mail Australia (24 September 2014)
Liverpool City Champion (25 November 2014)
Catholic Education Office Sydney (1 December 2014)
Opposing Views (24 September 2014)
Yahoo News (22 September 2014)
About Catholic Schools News (18 May 2015)
Paul was extremely generous with his time by visiting Sebastian at home, and also invited him to a Sharks home game once the season kicks off.
Unfortunately Sebastian couldn't be in the photo because of issues with body image, however his brother Jalen was more than happy to be in the photo!
To help support Sebastian, please visit http://gofund.me/sebsfightforlife