“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, Jeni. Julia likes being with her friends, watching Netflix and playing Xbox. She is also a golfer and enjoys walking her dog. Julie is 12-years-old and has CANDLE syndrome.
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. These lesions can become as large as a golf ball and are tender to the touch. They can also develop in her muscles causing extreme pain and difficulty walking. There are no known cures for this condition caused by a change or mutation in a gene that causes cells in the body to malfunction. Fortunately, Julia only has one gene mutation, whereas most of the children diagnosed have two mutations, so their symptoms are far more severe.
School was tough for Julia when she was younger, with other children commenting on her ‘bumps‘. As she has grown up her mom said, “Her sense of self worth and self esteem have grown as well, and now she puts on a good front. She tells me ‘it’s my disease and I have to learn to deal with it.’ That is not to deny she still has some difficult emotional moments,” says her mom.
Fortunately, “Julia has a great group of friends, and her disease has not affected her socially. In some ways, because Julia has to deal with the challenges of her ‘bumps’ I feel as if she has learned to look at a person’s inner beauty and not judge people on their looks”, said Jeni.
Jeni believes attending A Children’s House for Soul conferences and camp during the summer has helped Julia grow and learn. She said they loved every minute of the Love the Skin You’re In conference in June, finding the activities to have a special impact for Julia. They also appreciated the photo session with Rich Guidotti.
“Sometimes, life seems so hectic and there isn’t time in your schedule to go to a conference or support meeting, but make time. The support, contacts and information is so helpful and I have found that Julia comes away from them with a bit more confidence and knowledge, as well as realizing she’s not the only person out there dealing with things,” said Jeni.
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!
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.
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?