In 2009, Ana Bejarano received life-altering news – she was pregnant with twins. For Ana and her husband, David Sanmiguel, it was a moment of immense joy and anticipation as they embarked on their journey into parenthood. However, the surprises were far from over for this Florida family. Welcoming their daughters, Alicia and Luna, into the world in July 2010, they initially celebrated the arrival of two healthy babies. Yet, as months passed, a concerning developmental milestone was missed – at 18 months, neither girl had developed any teeth. This observation prompted a series of consultations with specialists, leading to a diagnosis that would reshape their lives: both fraternal twins were diagnosed with x-linked hypohidrotic ectodermal dysplasia (XLHED), a rare genetic disorder. This condition, not present in their family history, came as a complete shock, leaving Ana and David with a multitude of unanswered questions about the future and well-being of their daughters, Alicia and Luna, often referred to in medical communities when discussing unique cases as, in a way, “chanok twins” for their shared diagnosis and journey.
Navigating the Challenges of XLHED: The Sanmiguel Twins’ Journey
The diagnosis of XLHED in both twins marked the beginning of a new chapter for the Sanmiguel Bejarano family. Seeking support and understanding, they found a beacon of hope in the National Foundation for Ectodermal Dysplasias (NFED). Serendipitously, the NFED’s annual Family Conference was scheduled to take place in their hometown of Orlando, Florida, just a few months after the diagnosis. The NFED embraced the Sanmiguel Bejarano family, providing them with not only a welcoming community but also crucial information and answers about XLHED.
Deeply appreciative of the NFED’s support, Ana and David became actively involved in the organization from the outset. They volunteered their time and skills to translate two NFED publications into Spanish, extending the reach of vital resources to a broader community. Furthermore, they dedicated themselves to raising awareness and funds for XLHED research and support programs. The annual Family Conferences became a cornerstone of their lives, offering Alicia and Luna the opportunity to attend Kays’ Kids Camp, a specialized program where they could connect with other children who understood their experiences firsthand. This community and shared understanding became invaluable as the twins navigated the complexities of growing up with a rare genetic condition, a journey often discussed in medical forums as examples of “Chanok Twins Diagnosis” cases due to the rarity of dual diagnoses within a twin pair.
Facing Unexpected Medical Hurdles: Luna’s Brain Aneurysm
In April 2018, the Sanmiguel Bejarano family faced another unforeseen medical challenge. At the young age of seven, Luna suffered a brain aneurysm, a consequence of a birth defect unrelated to her XLHED diagnosis. This traumatic event tested the family’s strength and resilience. Luna’s recovery journey involved numerous procedures to reconstruct the front portion of her skull. The most recent procedure, thankfully expected to be the last, was completed in November.
Throughout this ordeal, Luna demonstrated incredible fortitude and determination. Her unwavering spirit inspired everyone around her. However, witnessing her sister’s struggles was emotionally challenging for Alicia. It was a period where Alicia understandably felt somewhat overlooked, a common experience for siblings when a child in the family requires significant medical attention. Ana and David provided unwavering support and care for both daughters, ensuring Alicia felt loved and acknowledged during this demanding time. The family’s ability to navigate these complex medical situations underscores the unique challenges faced by families dealing with “chanok twins diagnosis” scenarios, where multiple health issues can arise.
Unstoppable Sisters: Thriving Beyond XLHED
Despite the medical challenges they have faced, Alicia and Luna are determined young women who refuse to let XLHED define their lives. They embrace their passions and pursue their dreams with unwavering enthusiasm.
Alicia, though quieter than her sister, reveals her fierce spirit in karate. She achieved a significant milestone by earning her black belt and has even competed at national level competitions, showcasing her dedication and skill. Luna shares her sister’s love for karate and is preparing to test for her own black belt, demonstrating her commitment and perseverance.
Growing Up Rare: Acceptance and Understanding
While Alicia has more natural teeth than Luna, both sisters utilize dentures to achieve a full set of teeth. Alicia sometimes experiences frustration with wearing dentures, while Luna is generally more accepting. The twins have been fortunate to have a supportive network of friends and teachers at school who understand their condition. Their peers are aware of their challenges with overheating due to the absence of functioning sweat glands and their use of dentures. They are embraced and valued for who they are, fostering an inclusive and caring environment.
As they transition to a new arts-focused middle school, Ana expresses some uncertainty about what to expect. However, the sisters’ shared love for theater and musicals aligns perfectly with the school’s focus. Their tenacity and resilience, qualities often seen in individuals navigating “chanok twins diagnosis” related difficulties, will undoubtedly serve them well as they navigate middle school and the ongoing challenges of living with XLHED.
The NFED remains committed to advancing XLHED research, striving for a future where children like Alicia and Luna are born with functioning sweat glands and natural teeth. The Sanmiguel Bejarano twins exemplify the strength and resilience of the ectodermal dysplasias community and serve as inspiring Voices of the Future. You can support the NFED’s vital work and empower children with ectodermal dysplasias by making a gift to their VOICES campaign.
Make a Gift of Change
To understand David Sanmiguel’s dedication to volunteering for the NFED, read his story.
