Luisa’s boy is the only person in Australia with this rare condition.
Here, Luisa Aguiar, 43, tells the story in her own words.
Play-wrestling with his big brother, or kicking a soccer ball with his dad, my boy, Sebastian was always on the go.
A tiny, smiley five-year-old, he never sat still.
‘Our little flea!’ his grandparents, Teresa and Freddy, lovingly nicknamed him.
Expecting our third baby, my husband, also named Freddy, and I had our work cut out for us!
Then, I noticed Seb’s kindy uniform was getting tight, his belly straining against the waistband. And my cheeky boy’s energy was zapped.
‘I’m too tired to play, Mum,’ he’d say, drifting off to sleep on the couch.
There’s something wrong here, I worried. The weight gain made no sense. He ate the same healthy meals as his brother, Jalen, seven. And unlike other kids, Sebastian always reached for a carrot stick over lollies or chips.
Within three months, he’d put on 20 kilos. At 45 kilos, he was the size of a 13-year-old. ‘Even if you fed a child junk food 24/7, they wouldn’t put on this much weight so quickly,’ our GP said, referring us to a specialist.
A blood test found Seb’s hormones were haywire and his thyroid wasn’t functioning properly.
‘We see symptoms like this in kids with brain tumours,’ the doctor said. I was stunned.
In and out of hospital, cancer was ruled out. Sebastian just kept getting heavier. He tried his best, still playing soccer with his mates, despite being exhausted. But I could see the bright spark in my little flea dimming.
Now, Seb snored so loudly, I worried he’d stop breathing. It turned out, he had sleep apnoea. So, he had to wear a special mask at night to help him breathe.
It gave my poor baby night terrors and he’d scream down the house, petrified.
Then one day, six months later, I couldn’t wake Seb and he turned blue.
At hospital, he had a breathing tube inserted.
Sadly, my soccer fanatic had to give up his favourite game and he was devastated.
Each time we drove past the field, he’d cry, ‘Why me, Mummy?’ My heart broke.
We now had our newborn daughter, Kiara, and with Sebastian in and out of hospital, it was hard to cope.
Just before Seb’s seventh birthday, he tipped the scales at 70 kilos. And we finally got a diagnosis. He had rapid onset obesity, with hypothalamic dysfunction, hypoventilation and autonomic dysregulation (ROHHAD).
It was an incurable, life-threatening disorder that affected breathing, the heart and the endocrine system, which controls growth, metabolism and mood.
He was the only person in Australia with the condition and one of just 100 worldwide.
The average life expectancy was just 10. ‘Can God take it away?’ my boy asked. I wish, I thought.
Starting a strict high protein, low-carb ketogenic diet, Sebastian was only allowed between 500 and 800 calories daily – about half the recommended intake for a kid his age.
Brekkie was two boiled eggs and a few pieces of ham, while lunch was steamed cabbage, raw carrot and cucumber.
For dinner, he had fish and vegetables and he’d snack on diet jelly ice cubes and frozen berries.
Terrifyingly, soon after, Sebastian started to choke when he ate.
The doctors had no explanation, but instead of the food travelling down to his tummy, it was going up his nose and into his lungs. So, he had to have an operation on his epiglottis – the flap that keeps food from entering the windpipe. An angel, he never complained.
As Sebastian grew older, his moods would swing and he battled depression.
Now 11, his weight has ballooned to 110 kilos, but he’s still with us. If I pay him a compliment he gets really upset. ‘You’re cute,’ I’ll say. ‘Don’t be silly,’ he’ll scoff.
My beautiful boy even shuts his eyes when he brushes his teeth because he can’t bear to look at himself in the mirror.
His little sister, Kiara, five, is the only one who can make Sebastian laugh. His hunger is insatiable now. Despite his weight, he is starving and I have to lock the fridge and pantry.
‘Can I have some more, Mum?’ he’ll ask, bashfully.
On a ventilator all the time, Sebastian also needs a wheelchair to get around. As a family, we enjoy the simple things – a trip to the park or the movies.
Right now, it’s hard for us to get about, so we’re fundraising to adapt our home and to buy a modified van to fit Sebastian’s gear.
Sadly, Freddy and I have separated, but he comes over every day to help.
Each extra day with our boy is a blessing. And I’m determined to treasure every single moment.
To help Sebastian, go to gofundme.com/sebsfightforlife
Read more in this week’s issue of that’s life, on sale now.
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