“I would have given anything to know there were other kids like me. I was the only one and it was lonely, ” Alejandra said. Then in 2009 when she was serving as a camp counselor at Camp Dermadillo, her wish came true. “The entire week I was overwhelmed, just knowing someone with my condition was there. The last day, Dr Bree pulled me over and introduced me. We only talked for a few seconds, but it rocked my world! I was so happy to meet someone like me,” said Alejandra. At 28 years old, she still remembers that day as an amazing experience.
Alejandra has epidermolytic ichthyosis (formerly known as epidermolytic hyperkeratosis). It is a rare genetic condition that causes the skin to be diffusely red with an increased risk of skin infections. While the skin appears scaly and thickened, it is also very fragile and blisters easily. Because of the genetic changes in the skin cells, it is a permanent condition that does not have a cure. Treatments, while available, can be challenging and require an extreme amount of time each day.
Alejandra was born in Puerto Rico. At birth, she had what was described as “burned skin.” Her skin was peeling off and her face was bleeding. She knows it must have been so difficult for her mom to see her newborn baby affected in such a way. Not having answers and not knowing what the future held was overwhelming. It took several months before the doctors could do a skin biopsy, which then had to be sent to the United States to help confirm a diagnosis. She describes living in Puerto Rico with her condition as living in a black hole that was lacking in resources. Fortunately, in 2008 she moved with her family to Houston. With the help of medication and an intensive daily skin care routine, her condition is not as obvious as it once was.
She was married five years ago to a “true Texan” she met at church. Her husband likes to hunt and fish, but because of her skin condition she needs to spend more time inside. Her skin burns and tears easily. She also has less sweat glands, so she gets overheated and playing sports is not possible. She fortunately has found other passions that include painting with acrylics, cooking, and learning to write code for computers, with a bachelor’s degree in biology.
The Love the Skin You Are In conference in June offered a panel discussion, with her as one of the panelists. They were asked by parents, “What can we do?” She said everyone on the panel had the same answer, “Encourage them.”
A Children’s House for the Soul offers a safe place for families to feel encouraged, supported, and protected–where there are no questions and no stares. Being with others with skin conditions and birthmarks helps kids gain perspective. They and their families are not different here. “You are not alone and you will survive. It’s a place where they can feel normal and relax.” says Alejandra.
“There is no magical secret. Don’t sugarcoat. We all want it to be better.” Alejandra said. “I’m so glad my mom just let me cry until I stopped. She was there to relieve my stress at the end of the day. Classmates can be so mean and kids don’t feel they have a voice to defend themselves. Sometimes, I just wanted to be part of the wall.” Alejandra said growing up has helped her learn to care less about what other people think, but she wishes she’d had a supportive group of other kids and families with skin conditions when she was a child. She is grateful that now other children have a place to fit in, where they don’t feel as lonely as she did.
Alejandra’s strength and spirit, along with the love of the family, has led her to be a role model, a mentor for children with skin conditions and birthmarks. 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 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.
Validation means to acknowledge and sometimes normalize someone’s feelings or reactions to a specific scenario. Validation continues the conversation, creates trust, and helps children communicate their truest feelings with the adults around them.
We should not shelter our children from our disappointment. While it is natural to have this desire, it is not a good idea to want to keep them from knowing that we, as adults, sometimes have “bad” (i.e. not the most fun) feelings.
In February we launched a reboot of our #Iwasmadeamasterpiece social media campaign from this summer with a fun valentines themed twist.
As part of our birthday surprise, A Children’s House for the Soul announced the launch of our public capital campaign to buy 1972 W. Dallas and renovate the space into the first ever community building dedicated to the social, emotional and spiritual support of children with chronic skin conditions/birthmarks and their families.
The 2020 Camp Dermadillo Reunion was a great success! We had more than 60 friends new and “old” come to Speedy’s Fast Track for a great day of go-kart racing, mini golf, laser tag, arcade games and more.
Love the Skin You’re In Family Day 2019 is officially in the books! We had a great time and learned a lot and I am so grateful for the wonderful day!
As the month of November is upon us, I know we are all going to begin reflecting on what we are thankful for, and secretly looking towards the new year thinking of things we hope to come. I just wanted to write you a letter to thank you, Skin, for all the ways you’ve been there for me and shaped me as a person. I never really stopped to think about it before, but in a way, you have made all the difference.