Luke’s family calls him “Sunny Jim.” He’s smart, positive, and cheerful. He loves band at school and plays percussion instruments. He also loves playing video games and his favorite is Destiny. Luke is 12-years-old and starting 7th grade at school. He has a twin sister, with perfectly clear skin. Luke has eczema on his face, which stays flared up.
When asked about the challenges his skin condition presents at school he said, “I’m in advanced class, and have been for years. The kids in my class understand, but the general population asks. They aren’t trying to mean, they just don’t know.”
“My biggest challenge when others kids ask is to not take offense, “said Luke. “Most people just don’t know what eczema is.” Eczema, also known as atopic dermatitis, is a skin condition that is characterized by itchy, dry skin that is prone to irritation and infection. Living with severe eczema can be like riding on a roller coaster because there are periods when it flares up unexpectedly- but unlike a roller coaster ride, these flare-ups are anything but fun. They can produce sleepless nights and bloody sheets from scratching, which then can negatively impact mood and ability to concentrate, leading to family stress, school absences and academic difficulties when severe.
A Children’s House for the Soul has helped equip him with knowledge and positive support, while giving him the opportunity to connect with other kids in his situation. Luke and his parents attended the “Love the Skin You’re In” conference in June and he’s been to Camp Dermadillo four times. His family appreciates the encouraging environment where everyone knows what you’re going through. Luke’s dad, Dale, said it was really great to get support from other families and for the younger kids to learn from the older ones. Luke shook his head in agreement.
“Other people have stuff, not just me,” said Luke, “I liked the boxes we built, people saw you.” The box activity helped kids understand they can’t be put in a box because of their condition.
Dale said he enjoyed hearing youth motivational speaker Shannon Pickard. He was funny and entertaining, while helping the kids find joy with that all so important sense of feeing normal.
Luke’s’ parents said the sessions with New York based photographer Rick Guidotti were great. They loved how he used his talents to photograph kids with unique skin conditions. “The kids came alive when he talked to them,” said Dale.
Julie, his mom, said being with children and teens in his situation has been good for Luke. “Others have things that can be even more difficult and painful, requiring constant vigilance. Some kids are dealing with worse things. It has given him perspective.”
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!
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.
After the last several months of this pandemic, I think we are all well-versed in how important it is to wash our hands so that we don’t spread germs. But with all this hand washing and sanitizing, dry skin, eczema breakouts, and contact dermatitis have become even more troublesome. What can we do about it?
Join us for a quick and very insightful video interview with Dr. Alana Kennedy-Nasser as she shares with us how to keep kids safe as they go back to school in-person and how to keep kids developmentally “on track” as they attend school virtually.
What questions do you have for back to school content experts? Read on for some brilliant questions and answers from this super smart teacher mama, Lacy Cunningham, M.A.Ed.
Online learning can be a fun experience filled with lots of great experiences; but as humans, we were meant to interact with one another and have companionship. How can we develop ways to ensure kids stay engaged while learning in a different setting?
This year, the normal first day of school jitters will likely be accompanied by some new concerns that we have not encountered before. Lindsey O’Sullivan, Child Life Specialist, provides guidance on how to navigate these conversations with your child.
As we prepare for school to begin, those of us that are sending our kiddos slowly back out into the world may find ourselves explaining what has changed (again) in the last few months. Dr. Chad Brandt, a therapist who specializes in anxiety in children and teens, offers us a few guideposts for talking about the coronavirus with children.