Couple Raising Awareness About Baby’s Rare Skin Disorder

LOS ANGELES (CBSLA.com)  — When Kacy Dworsky was born, his parents Stephanie and Dan were shocked by his appearance.

“You know, you go through 10 months to do everything you can to have a perfect pregnancy and be healthy, and then you think you did something wrong,” Stephanie Dworsky said.

Kacy was born with congenital melanocytic nevus, an extremely rare skin disorder that causes large moles to grow all over the body. Only 1 in about a 500,000 people have a case as severe as Kacy’s.

“It was everywhere,” Stephanie said. “Just spots on his face and legs, and his back is covered.”

Aside from an increased risk of skin cancer, the effects of the disorder are mostly cosmetic. Now 3 months old, though so loved by his parents, Stephanie admits she worries that people won’t accept her son and she often stays at home.

“I try not to go out, and I feel so guilty,” Stephanie said.

The Dworskys are trying to raise awareness, hoping to erase some of the stigma of rare skin disorders.

When Kacy was born, doctors warned the couple about public reaction.

“People will stare, kids may say mean things, even parents may not want their child playing with yours because they don’t know what this is,” Dan Dworsky said.

Probably the most accepting of Kacy’s condition is his 3-year-old sister.

“From Day 1, she didn’t see anything on his face,” Dan said. “She never mentioned it. The only way we knew she saw it was when she would only kiss him on his spots.”

Spots that may stand out but won’t define this little boy.

Click here for more information on congenital melanocytic nevus.

Comments

One Comment

  1. Tamyra Williams says:

    What a precious, adorable boy! Don’t worry about his condition he is perfect! I am a public school teacher (4th graders) trust me he will be loved by those worthy of him!

  2. My goodness he is the cutest Lil thing!! I think he’s perfect and he looks like such a happy lil baby 😍💕

  3. He is a cute little boy….<3❤❤

  4. My daughter was born with a large birthmark on her face (hemangioma) I felt the same way as this mother when she was little. I was worried about the stares and comments and trust me there were a lot of them. I was also told by her doctors that she would have low self esteem and that other children would tease her about her “strawberry.” Fast forward 13 years and I will tell you what I have learned. I decided that my reaction to the public about her birthmark would be the way she reacted to it. So i did not shy away from stares and questions and I taught my daughter that most people are just curious and it is ok. Just be polite and answer as many questions as you feel comfortable with. Next, children are way more accepting about her birthmark than adults are. The ONLY mean comments she or I have received have been from adults. Let me tell you the best part of this entire situation. When my daughter was 10 she saw a set of newborn twins that had “strawberry” birthmarks just like hers at a gas station we stopped at on a road trip. She asked if it was alright if she could talk to the babies’ parents. She told them that it doesn’t hurt and that it isn’t a big deal so dont worry about the babies, they will be just fine. She also said (at age 6) the best part of having a birthmark is this, “I may not remember every person that I meet but I know they will remember me.” She has taught me what self acceptance really is.

  5. cardiotech3 says:

    He’s precious! If I saw this baby out, I would just think he was born with birthmarks. Please don’t let the world take away your joy! Many parents are morning the loss of their precious babies. Yours is here and well! What a blessing that is! Let your sweet little girl be your guide (as you have done). Isn’t that the sweetest? She only kisses the spots. Hang in there guys, keep raising awareness.

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