Ana Bejarano nearly fainted when she heard the news in 2009.
She was carrying twins! It was the first pregnancy for her and husband, David Sanmiguel.
But, the surprises didn’t stop there. Their daughters, Alicia and Luna, were born healthy in the summer of July of 2010. However, 18 months later, the girls still had not developed any teeth.
A geneticist confirmed what their pediatrician and dentist suspected. Both of the fraternal twins were diagnosed with the rare genetic disorder, x-linked hyphohidrotic ectodermal dysplasia (XLHED).
The condition didn’t run in their family. The new parents were shocked. They had so many questions.
Luck would have it that the National Foundation for Ectodermal Dysplasias (NFED) was hosting its annual Family Conference in Orlando, Florida where they live, just months later.
The NFED welcomed the Sanmiguel Bejarano family with open arms, understanding and answers.
Grateful for the support, Ana and David got involved with the NFED right from the beginning, volunteering to translate two NFED books into Spanish and raising awareness and funds.
They became regulars at the annual Family Conferences where Alicia and Luna could attend Kays’ Kids Camp and be with other kids like them.
Another Medical Challenge
Life took another unexpected turn for the Florida family in April of 2018. At just 7 years old, sweet Luna would experience a brain aneurysm as a result of a birth defect completely unrelated to her XLHED. It was an incredibly traumatic time for all of them.
But, little Luna rallied, with the love and support of her family and friends. For the next few years, she endured numerous procedures to fully reconstruct the front half of her skull. Her most recent one was in November and the family expects it to be the last, thankfully!
Through it all, the girls are warriors of the best kind! Luna grew stronger and persevered as if it had never happened.
Yet, it was rough for Alicia to see her sister go through it. At times, she felt left behind, which is typical when there is a sick child in the family. Ana and David helped her through it.
No Stopping Them
The sisters don’t let their syndrome stop them from doing the things they love.
Alicia may be shyer than her sister but she is fierce when she dons her karate Gi or uniform. Earlier this year, the quiet young lady earned her black belt! She’s even competed at national competitions.
Luna also loves karate and will test for her black belt in the coming months.
Growing Up Rare
Alicia has more teeth than Luna but both girls wear dentures so they can have a full dentition. Alicia tires of wearing the dentures and often wishes she didn’t have to. Luna doesn’t care as much.
Ana said they are lucky to have had the same group of understanding friends and loving teachers at their school. They all know about the girls’ issues with overheating because they don’t have working sweat glands. Their peers know the sisters wear dentures. They love Alicia and Luna for who they are.
But, the girls will attend a new middle school in the fall. The school is arts oriented which is perfect for Alicia and Luna. The sisters love performing in theater and musicals. Ana’s not sure what to expect with the transition.
We believe that Alicia and Luna’s tenacity will serve them well as they manage middle school and the issues that come with being affected by XLHED. We look forward to seeing how confidently they use their voices, whether it’s on stage, demonstrating karate, or boldly living life!
The NFED dreams of a future where children affected by XLHED like Alicia and Luna are born with working sweat glands and develop a mouth full of teeth. We continue to champion XLHED research that would positively impact the Sanmiguel Bejarano family for generations to come.
Alicia and Luna are just two of the many children around the world who face challenges caused by ectodermal dysplasias. They are the Voices of the Future for our community.
You can support our efforts to help all children with ectodermal dysplasias. Will you give a gift of change for our VOICES campaign?
To read why David Sanmiguel volunteers for the NFED, read his story.