Sydney school fights to help student with rare disease

Sydney school fights to help student with rare disease

A Sydney school is battling to get help for one of its students, a seven-year-old suffering from a disease that affects just 75 people in the world.

Sebastian Aguiar suffers from Rapid-Onset Obesity with Hypathalamic Dysfunction, Hypoventilation and Auto-Nomic Dysregulation, ROHHADS syndrome.

This disease has seen his weight triple in less than two years.

According to his mother Luisa Aguiar: "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."

Sebastian was born a perfectly healthy, normal baby and for five years great into a happy healthy little boy.

But when he turned five, things changed. At any moment Sebastian can stop breathing. He lives with a tracheotomy tube permanently embedded in his throat.

He lacks energy and continually needs hospital visits where doctors can only treat his symptoms but not his syndrome.


Since kindergarten, Sebastian has been attending St John the Baptist primary school in Bonnyrigg Heights.

It's his only solace form the continual medications, ventilations and long hospital stays.

His primary school is now getting behind Sebastian to try to raise enough money to get him to the only place on the planet which may be able to help him. The Lurie's Childrens Hospital in Chicago.

But the Aguiar family needs to raise more than $100,000 to get Sebastian there.

If you'd like to make a donation, please visit Sebastian's fight for life

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