Parents of boy with rare skin condition cop 'child abuse' accusations

The parents of a three-year-old child, who was born with a genetic condition that makes his skin red, have been stopped by strangers accusing them of child abuse.

Chaz Weightman is a little boy with red skin, but it’s not sunburn.

Just months after his birth, he was diagnosed with an extremely rare skin disorder called Netherton Syndrome.

His parents, Casey and Justin, say they have been left humiliated after strangers in their hometown of Ballarat stopped them in the street, questioning their parenting and even calling the police.

“We had the police called on us twice to a severely sunburnt child, that was the hardest I've ever dealt with,” she told Today Tonight.

Chaz Weightman was diagnosed with Netherton Syndrome just months after his birth. Source: Today Tonight

“I burst into tears, the first thing they said to me is we're getting medical, I said ‘he is ok’ and a member of the public was concerned he was severely sunburnt

“On a regular basis we go down to the shops and people stare, some people do make comments, I'm quick to defend.”

Dermatologist Dr Susan Robertson said as few as one in 200,000 are born with the disorder that can affect the skin, hair and the immune system.

The condition means the Chaz's skin is abnormally dry, scaly and inflamed.

Chaz has to be covered from head to toe in Cetaphil every morning. Source: Today Tonight

“It's also more leaky than normal skin which means essential fluids and proteins are lost through the skin, leading to dehydration and growth failure,” Dr Robertson said.

The condition is so rare, both parents must possess the specific gene in order for it to be passed down to a child.

“It's quite rare that me and my husband found each other and we had it and passed onto Chaz,” Ms Weightman added.

However the red and inflamed appearance of the skin looks more painful and problematic than it is, If treated and managed properly.

The family fear what the future holds for Chaz and his rare condition. Source: Today Tonight

"Every day Chaz has a salt bleach bath to kill any staph on the skin and then we cover him in Cetaphil cream from head to toe in the morning and touch up when it's getting dry," Ms Weightman said.

While he’s currently too young to be affected by what’s said of his incurable skin condition, Ms Weightman said they fear what the future holds.

“That's every parents worst nightmare, the bullying side of it because society is quite cruel, I hope we teach him to be resilient and strong so he can stand up for himself,” she said.

“He'll have it for the rest of his life, he'll learn to maintain it and keep going as he is.”