True life: Casey, 28, shares the story of little Chaz
Tears streamed down my cheeks as my newborn baby, Chaz, was placed on my chest.
“He’s perfect,” my husband, Justin, said, grinning.
I couldn’t remember ever feeling so happy.
But doctors were concerned by an angry red rash on Chaz’s torso so they ran some tests.
At five days, his skin began flaking and cracking, and when the redness spread over his entire body, he was transferred to the Royal Children’s Hospital in Melbourne.
Doctors had no idea what it was.
“It looks like really bad sunburn,” I fretted to Justin.
Chaz became dehydrated because fluid leaked from the cracks in his skin.
He fought off staph infections and suspected meningitis.
Then finally, after four months, he was diagnosed with two genetic conditions.
Jeune syndrome had caused a narrowing of his rib cage, but that wasn’t serious. However, the rash was a symptom of Netherton syndrome.
“There’s no cure,” the specialist said.
Chaz as a newborn.
Justin pulled me into his arms as my mind swam with worry.
Chaz’s body burned up energy shedding and replacing skin so he needed a high-calorie diet to boost his fluids and proteins.
Moisturising him every day was vital to prevent skin cracks, and daily baths in diluted bleach helped kill potentially deadly infections.
Despite everything, Chaz was a happy little boy and he adjusted quickly.
He grew into a cheeky little toddler who loved Lego, The Wiggles and footy.
When he started day care, I sat him down for a talk.
“You’ve got special skin,” I told him. “But you’re just like everyone else.”
Thankfully, the other kids didn’t care.
They just loved his cheeky nature.
But not all adults were as understanding.
We were at the Clipsal 500 Supercars race in Adelaide when a man approached me.
Justin was in the grandstand and Chaz was asleep in his pram.
“Is he okay?” the man asked, gesturing at my dozing boy.
“He’s fine,” I said.
Another guy approached.
“Do you want some water or sunscreen for him?” he asked.
“No thanks,” I replied. “He has a syndrome which makes his skin look sunburnt.”
He eyed me suspiciously.
I was shocked. Did he think I was lying?
Next a security guard came over. “Do you need a medic?” he asked.
I was on the verge of tears.
“No, he’s okay. He has a syndrome,” I sighed.
Chaz woke and I’d just started feeding him when three police officers came over.
Our cheeky Chaz is just like any other kid.
“Look, love, medical are on the way,” one said.
Humiliated, I burst into tears while trying to explain that I hadn’t let my little boy get sunburnt, he had a syndrome.
Then Justin turned up.
“What’s going on?” he asked.
“They think Chaz is sunburnt,” I cried.
Finally, they checked with the hospital and discovered we were telling the truth.
Humiliated, we left.
“We’re not going back tomorrow,” Justin fumed.
“It’ll be fine,” I said, thinking it was just a one-off.
But the next day, within 30 minutes of returning, a woman glared at us and got on her phone.
Police soon approached us and we were humiliated all over again until they contacted the officers from the day before.
After that I got a letter from Chaz’s specialist and had cards printed so we’d never have to go through that again.
No, I’m not sunburnt. I have a rare skin condition, the cards say, with an explanation of Netherton syndrome.
I appreciate people are concerned, but please don’t be so quick to judge.
Justin and I love our little boy with all our heart. We’d never do anything to hurt him.
