Girl with rare skin disease receives opportunity to write book, seeking public’s help publishing

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SOUTH JORDAN, Utah (ABC4 News) – A 10-year-old girl has been living with a rare skin disease for over six years now and a non-profit organization is helping to make her dreams of being a published author come true.

Alyssa Poirer was diagnosed with Darier Disease at four years old and her mother says she’s the youngest Utahn to be diagnosed, and is one in 100,000 people with the skin disease.

“So, it’s a skin disease that makes you hot and rashy and you can barely even sweat,” Alyssa says.

Alyssa says she has been teased by other kids at her old school because of it.

“One of my friends said, “Well, if you do have a skin disease, I can’t be your friend anymore,” Alyssa says.   

While living with this hasn’t been easy for Alyssa, thanks to the Red Fred Project, she’s made new friends who play with her and are giving her a voice.

“So, Troop Alyssa, it’s our team…we’re an amalgamation of unique skills sets we’ll say cause we’ve got writer, photographer, graphic designer, and [videographer],” says photographer Bjolan Holyoak.

Throughout the last year, Alyssa has been working on this project and has been playing at the playground and diving at the pool – all to write her storybook called, ‘A Swimmer’s Wings.’

“She gets to have a book written about her and now she gets to express herself,” says her father Jean-Paul Poirier.

“She wants to help others feel accepted no matter how different they are cause she’s gone through it first-hand and then also she’s always wanted to write,” says her mother Shylah Poirier.

Flipping through the pages of Alyssa’s storybook, you’ll find lessons of how friends can help you, and how everyone deserves a second chance.

While Alyssa hopes to inspire others with her story, her troop of the Red Fred project says she personally has taught them a lot.

“Alyssa has taught me a lot about difficulty because her disease is forced upon her,” says videographer Jonathan Haddock.

“It’s so incredible really and inspirational to watch her having something that she struggles with that causes her physical pain and yet that’s not enough to deter her from pursuing her dreams,” Holyoak says.  

“Alyssa is one of the most optimistic, cheerful, sweet, people I’ve ever met,” says write Andie Pearce.

“It really brings out how inclusive she is despite this,” says design/illustrator Esther Ly. “She doesn’t take it out on people but wants to accept everyone, knowing, she’s also gone through it.”

Alyssa’s book is almost complete, however, she is seeking donations to have the book published.

To support Alyssa, click here.

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