Stephanie and Dan Dworksy were shocked when they laid eyes on their newborn son, Kacy, for the first time.
Kacy was born with melanocytic nevus, a skin disease that causes large black spots all over the body.
“They were just everywhere. Spots on his face, on his legs, his back is covered,” says mother Stephanie.
The disease affects 1 in 500 000 people and comes with an increased risk of skin cancer – but otherwise, the effects are purely cosmetic.
Stephanie lives with guilt every day because of her son’s spots.
“You know, you go through 10 months doing everything that you can dto have a perfect pregnancy and be healthy, and then you think you did something wrong,” she says.
Stephanie realizes that her son is different and their lives would be affected because of it. But the family is now seeking to raise awareness about their son’s rare disease.
Stephanie and Dan Dworksy were shocked when they laid eyes on their newborn son, Kacy, for the first time.
Kacy Daniel was born on the 9th of June 2016 with melanocytic nevus, a skin disease that causes large black spots all over the body. He had a Giant Arm Nevus on his left arm and “satellites” all over his body.
“They were just everywhere. Spots on his face, on his legs, his back is covered,” his mother Stephanie told CBS Los Angeles.
The disease affects 1 in 500 000 people and comes with an increased risk of skin cancer – not to mention the social issues his parents feared would be faced with, which as a parent is unbearable to even think about.
Otherwise, the effects of the spots are purely cosmetic.
But Stephanie explained in 2016 that she lived with guilt every day because of her son’s spots.
“You know, you go through 10 months doing everything that you can do have a perfect pregnancy and be healthy, and then you think you did something wrong,” she said.
Stephanie realized that her son was different and their lives would be affected because of it. But the family was seeking to raise awareness about their son’s rare disease.
When Kacy was born, doctors warned that his appearance would likely cause unwanted glances and comments.
“People are going to stare at him, kids may say some mean things (…) you may even find parents that don’t want their kids to be near him, because they don’t know what this is,” father Dan says.
The fear of seeing or hearing her son ridiculed or bullied has pushed Stephanie not to go out some days.
“I try not to go out, and I feel so guilty about it,” says Stephanie.
There are no easy solutions when you have a child that looks a little different and you have no control over people’s prejudices.
But the couple is now trying to transform people’s perceptions by creating more awareness about rare skin disorders – hoping in turn to promise their little boy a better future.
We hope that spreading awareness about Kacy’s condition will help the public have a better understanding about his diisease and realize that he is a sweet baby just like any other.