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Mum Of Girl, 4, With Rare Pigment Condition Says She Loves Her ‘Super-Marks’

by : Cameron Frew on : 13 Apr 2020 11:39
Mum and Daughter with rare genetic skin conditionMum and Daughter with rare genetic skin conditionMedia Drum World

Priscilla was born with piebaldism, a genetic condition that causes two-toned skin and patches of white hair. Some people gawk, but the four-year-old loves her ‘super-marks’. 

Her mum, Vicki Gagliardi – a teacher from New York, USA – has the same condition, causing an unpigmented or white patch of skin and/or hair. ‘When I finally got pregnant, I prayed to God that my child didn’t get it. As a parent, we want to keep our children protected,’ she said.

When Priscilla was born in 2015, the nurses revealed she too had white hair. This marked the end of her mum’s insecurity: ‘I knew right then and there that the days of me covering up my skin were through. God gave her this condition to teach me a lesson. I want my baby to be proud of the skin she has.’

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Mum and Daughter with rare genetic skin condition 2Mum and Daughter with rare genetic skin condition 2Media Drum World

The condition is common in the family, with Vicki’s sister, father, nephews and a few aunts and uncles all having it. The 46-year-old had struggled with the condition growing up, and having been ‘made fun of in elementary school… by the time I got to high-school, I covered it all year long.’

Vicki and her partner, Argely, want a different experience for Priscilla though, explaining: 

Priscilla calls her ‘spots’ her super-marks. Her dad and I told her a long time ago that the skin we had made us special like superheroes. Now when we play, we put our arms together and say ‘super-mark power’. My whole family make a point of telling her how beautiful she is. I want her to know that and always feel confident about herself.

She loves to look in the mirror. I’m thrilled that she loves what she sees. Some people tell us that she was kissed by an angel. She has lots of friends in her pre-kindergarten class. The teacher asked if I wanted to explain piebaldism to the class, but we decided it was only necessary if they asked questions and they never did.

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Mum and Daughter with rare genetic skin conditionMum and Daughter with rare genetic skin conditionMedia Drum World

There have been occasional tough moments for the youngster, with her mum picking up on the same passing judgement she endured. For example, at a recent Taekwondo lesson, Priscilla asked if they could move somewhere private to change into her uniform so people wouldn’t ‘laugh at her legs’.

Vicki added: 

People stare – very rudely – both adults and children. We take her to the mall and people will almost break their necks staring as we walk by. Sometimes people don’t realise that she’s just a baby. That type of behaviour can make her very uncomfortable. One time in a supermarket, a man asked if I’d dyed her hair. She was only three – what kind of mother would I be if I had done that?

Last summer, Argely and I took her to Central Park in Manhattan. There were so many kids there and none of them wanted to play with her. She wasn’t aware but it broke my heart to watch it happening.

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Mum and Daughter with rare genetic skin condition 4Mum and Daughter with rare genetic skin condition 4Media Drum World

Neither her mum or Argely tolerate bullying. While they’re aware Priscilla is probably too young to fully appreciate her condition, they never ‘want her to feel that she has to cover them or hide’ her spots.

Her parents hope to raise awareness around piebaldism in the hopes of easing Priscilla’s life but also the lives of other children who may have similar conditions.

Mum and Daughter with rare genetic skin condition 3Mum and Daughter with rare genetic skin condition 3Media Drum World
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Vicki said:

The more people that know about piebaldism, the less they will stare. If people want to know why her skin looks different, I’d rather they ask me. Teach your children that everyone is different in their own ways. I show the students my skin and I talk to them to try and teach kindness. Things that make us different are the same things that make us beautiful.

Be kind, folks. It’s not hard, is it?

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Cameron Frew

After graduating from Glasgow Caledonian University with an NCTJ and BCTJ-accredited Multimedia Journalism degree, Cameron ventured into the world of print journalism at The National, while also working as a freelance film journalist on the side, becoming an accredited Rotten Tomatoes critic in the process. He's now left his Scottish homelands and took up residence at UNILAD as a journalist.

Topics: Health, children, Genetic, New York, Parenting, Piebaldism, skin