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’s nurturing and giving. She’s had the same two close friends since third grade and volunteered this summer at Vacation Bible School. 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. It is an uncommon condition with no known cause that leads to thickening and discoloration of the skin, which often results in depressed areas that can sometimes be quite obvious.
“Most of her friends don’t even realize the number of doctor visits she has,” said her mom. “Mia doesn’t talk a lot about it, but she knows she looks different. It’s helpful for her to have others to talk to.”
A Children’s House for the Soul has given her the opportunity to talk and connect with other kids facing similar challenges. Mia recently participated in the “Love the Skin You’re In” conference and her mom says she loved it. She loved being with and seeing other kids who look different. Talking pictures with New York based photographer and author, Rick Guidotti, was a highlight. The conference gave Mia, her mom, and other children and their families a safe, warm, and positive place to share their thoughts, feelings, and experiences.
“Every time I come to a conference, I just want to cry because so many people care. It’s inspiring,” said Julie. Julie says being with others with skin conditions and learning about them has helped Mia to be more grateful and open to new experiences. She is a leader in helping others.
While Mia has faced questions and stares because of her skin condition, she has also learned all people are different. Some differences are just visible to others. Attending conferences and camp in the summer has helped her develop that nurturing and giving personality.
Would you like to be part of this uplifting, honest and encouraging community? Please join us for conferences, camps, support groups, and Bible studies by registering today. Love the Skin You’re In today!
Getting your child to comply with wet wraps can feel like can be a battle! Which if you think about it, is a little ironic, because by administering wet wraps you are helping your child’s suit of armor, their skin defends itself against the outside world! So let us talk strategy, determine some “weapons” for your arsenal, and let’s realign so that you and your child can go from enemies to allies.
When we feel overwhelmed or stressed, it can be tempting to tell ourselves (or each other!) Just relax, calm down! When we are stressed or freaking out, that is easier said than done. That’s why preparing a “coping tool kit,” a set of strategies for dealing with stress can be really powerful.
Do you freak out when you break out? I know I have! It is natural when we have a break-out to look in the mirror and think things like “These pimples are gross!” “I hate my skin!” “Things are never going to get any better!” Even though it is natural we think this way, it is harmful too.
Stop picking, popping, poking your pimples!
I know, it’s sort of like eating the whole bag of potato chips…we all know we aren’t supposed to do it, and yet, the temptation is SO STRONG! So…how do you stop?
Start with choosing an alternative activity!
We had so much fun at our first annual Heart + Sole Walk and Back To School Family festival! We want to thank all of our sponsors and everyone who came out to support our mission to make the world a more kind and understanding place for those with skin conditions.
As a Child Life Specialist working with teens and kids who have special skin, there is one question I get A LOT. “How do I talk to my teenager, when they tell me they don’t like how they look?” Parents are so worried that they will say the “wrong thing.” And truthfully, I have spent …
We had an amazing time celebrating the launch of our brand new SKIN DISCOVERY BOXES, a very special collaboration with our friends at CeraVe! CeraVe’s tireless pursuit of therapeutic skincare for all is truly more than skin deep and we couldn’t be more thankful. We celebrated in style thanks to our friends at Star Cinema …
A Children’s House for the Soul believes that it takes a village to support a child and family impacted by skin disease and birthmarks and that we are all better together.
Open House and Ribbon Cutting/Bring A Children’s House Home: On June 5th we began a very exciting new chapter of our A Children’s House story in the form of opening up our new beautiful space to serve children and teenagers with skin conditions and birthmarks and their families. This space includes a salon, a library & craft space, a teen room, and more! We also debuted our incredible new custom mural from up and coming local artist Eli Pallaert.
Our Family Trivia night was oh so much fun, and a huge success! We had so much fun getting to reconnect with all our friends and enjoy some laughs while snacking out on pizza and snowcones!
In honor of Vascular Birthmark Awareness Month, our childlife specialist Lindsay O’Sullivan had a great conversation with Jose about growing up with his special masterpiece skin!
In this interview, Ally shares about her experiences growing up with Ichthyosis. Ally shares how: Meeting other kids with special skin can help kids to feel less isolated and give them a very special sense of comradery and understanding. Parents don’t have to do everything perfectly to be the perfect parent for their child and …
What a wonderful time to relax, enjoy friendly company, and share their hearts on being a mama to a kiddo or teen with special skin. It was truly so special! These mamas were made a masterpiece!
Vascular birthmarks are very common in children. These birthmarks are made of blood vessels in the skin and can occur anywhere on the body. They may be pink or red in color, blue or purplish, flat or raised. Since they are vascular, sometimes they will feel warm to touch and may change in color with …
We have some exciting updates about our Capital Campaign! Learn about our short and long term plans for our own space.
You Can’t Teach What Has No History “This is how much God loved the world: He gave his Son, his one and only Son. And this is why: so that no one need be destroyed; by believing in him, anyone can have a whole and lasting life. God didn’t go to all the trouble of …
In honor of Ectodermal Dysplasia Awareness month in February, we sat down with two of our dearest friends Zach and his mama Susan! Zach is an avid golfer, an Aggie, and is affected by Ectodermal Dysplasia. Susan and Zach teach us about ED and the importance of finding community. They also had helpful tips and …
Join us for a fun and inspiring interview with this incredible lady Ana Maria! Ana Maria Triana is 15 years old and the author of How to Conquer Alopecia Universalis. Ana Maria gives heartfelt advice, shares wisdom beyond her years, and will leave you feeling full of compassion and confidence. A Children’s House for the …
In honor of the upcoming National Epidermolysis Bullosa (EB) Awareness week, we wanted to share this great piece from our friend, Rachael Wrobel about how her mama mothered her well, even despite the challenges of EB.
I am fortunate enough to be Mama to three little girls. Shortly after my eldest daughter’s first birthday (about 4 years ago) I noticed her hair was thinning. I was told by many it was just typical baby hair loss until it just couldn’t be described at “typical” any longer.