“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!
Is there anything more fun than being able to celebrate Christmas in July with friends at the ACHFTS House? We think not! We had the most amazing day celebrating all things Christmas during our annual “Itching to get out event!” We got messy making some delicious cookies in our ACH kitchen, made a splash and …
We had such a special day out Camp for all, for our Camp Dermadillo Family Day! We rode horses, panned for jewels, rock climbed, ziplined, laughed, played, shot arrows, and even sang happy birthday! So many new friends were made and everyone was reminded that they were made a masterpiece! We had several new families …
Our Praise Party on March 6th was such a special day! We had cookies, played with toys and created prayer and wish boxes. Most importantly we took the time to celebrate all of the wonderful gifts that have been provided to us through the end of 2021 and into 2022. We are so grateful for the provision of our amazing donors, our wonderful volunteers, and dear friends and families who help us to live our mission every day. Most of all we are grateful to Jesus, the Lord our God who through all of these allows us to spread His message that we are all made a masterpiece. Check out our Praise and Answered Prayers Board to see just some of our 2021 blessings.
A Children’s House For The Soul was honored to participate in the 2022 Chevron Houston Marathon! It was our first year as a run for a reason charity and we were so blessed with such a special opportunity! We had a team of over 10 half and full marathon runners, and 8 5K runners representing …
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 …