Mia’s mom, Julie, describes her as a silly, smiling, happy-go-lucky girl. She plays the ukulele and volleyball and she loves to sew, recently making pillowcases. She is a well-rounded, beautiful typical 13- year-old girl, with one unique challenge. Mia has localized scleroderma, also known as morphea, on the left side of her face, affecting her chin and the area next to her eye.
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“Jules has a sweet disposition, is a great friend, and an excellent student. She will stick up for what she believes in and does not feel as if she needs to follow the crowd,” said Julia’s mom, CANDLE syndrome stands for Chronic Atypical Neutrophilic Dermatosis with Lipodystrophy and Elevated temperatures, and there are only 60 known cases. This condition causes Julia to develop “bumps” all over body, but they mostly affect her face and bottoms of her feet.
“I would have given anything to know there were other kids like me. I was the only one and it was lonely.” Allie has epidermolytic ichthyosis and share how ACHFTS has helped her manage it.
Luke’s family calls him “Sunny Jim.” He’s smart, positive, and cheerful. He loves band at school and plays percussion instruments. He has a twin sister, with perfectly clear skin. Luke has eczema on his face, which stays flared up.
Kurtis is 14 years old. He loves music and video games, but he dreams of becoming a professional basketball player. When he’s not a school, you can find him on the court practicing with his AAU team, Texas Explosion!
“Megan is an awesome girl, she’s outgoing, smart, and above her years in age,” is how her mom, Paige, describes her. She’s bubbly, artistic, and learning to be a photographer. She also has alopecia areata.