Hope for Melany: A Community’s Call to Action

A young girl is battling a rare genetic condition: Here's how to help

In the small pueblos surrounding Mérida, stories of resilience often emerge from the most challenging circumstances. Today, one such story centers on Melany, a young girl whose battle with a rare genetic condition has captured the attention of photographer and humanitarian Pedro Tec, founder of the charitable organization Los Mayas Eternos.

Melany lives with tuberous sclerosis complex (TSC), a rare genetic disease that strikes approximately one in every 6,000 to 10,000 children worldwide. This condition causes benign tumors to grow in vital organs including the brain, heart, kidneys, and skin, leading to seizures, developmental challenges, and requiring constant medical supervision.

How You Can Help

Melany’s current needs are both urgent and practical. Her family requires basic supplies, including diapers and nutritious food, essential medications for seizure management, and regular access to specialized medical care. Additionally, they need a wheelchair to improve her mobility and transportation assistance to medical appointments—a significant challenge for a single mother without reliable vehicle access.

The response mechanism Los Mayas Eternos has established reflects their experience in community assistance. The organization accepts financial contributions through PayPal (see below), the same system they’ve used successfully for previous community aid efforts. For those wanting direct contact, they’ve provided a WhatsApp number (+52 9993543904) for coordination.

For families like Melany’s, TSC presents overwhelming challenges. About 85-90% of children with TSC experience seizures, often beginning in infancy, and many face developmental delays and learning difficulties. The condition demands continuous medical care, specialized medications, and regular monitoring that can strain even well-resourced families.

Melany’s situation is particularly dire. Following her father’s death, her mother has become her sole caregiver, managing round-the-clock care while navigating the complex medical needs TSC requires. Adding to their struggles, Melany lacks social security coverage, making access to treatments and basic necessities even more challenging.

A Familiar Face in Community Service

The call for help comes from Pedro Tec, a name familiar to Yucatan Magazine readers and the broader Yucatecan arts community. The photographer from Ixil, a pueblo of fewer than 4,000 people northwest of Mérida, first gained recognition for his haunting black-and-white portraits of Mayan elders. However, he has increasingly focused his efforts on community service.

Tec founded Los Mayas Eternos in 2020, initially to assist families dealing with agricultural losses from Hurricane Ida. Since then, the organization has expanded its mission to provide food, medicine, clothing, and blankets to Mayan families throughout Yucatán, with a particular focus on women and children.

During the COVID-19 pandemic, Tec demonstrated the organization’s commitment to community welfare. “COVID-19 is a big problem in the Maya community, with no work and difficulty getting food,” he explained at the time, using social media to coordinate donations that helped 80 families in a single Sunday.

The organization has embraced innovative approaches, including the K-otoch program, which uses smartphone technology and geo-positioning to connect willing donors directly with families in need. The name, meaning “our home” in Mayan, reflects the community-centered philosophy that drives their work.

Understanding Tuberous Sclerosis Complex

To grasp the urgency of Melany’s situation, it’s important to understand TSC’s impact on families. The condition typically manifests in the first six months of life, with seizures often being the first sign that alerts parents to seek medical help.

Children with TSC may experience various types of seizures, including infantile spasms, focal seizures, and tonic-clonic seizures. The condition frequently leads to drug-resistant epilepsy, making seizure management particularly challenging. Beyond seizures, many children face cognitive and developmental challenges, with 25 to 50% developing autism spectrum disorders.

While there is currently no cure for TSC, many symptoms can be effectively managed with proper treatment. Antiepileptic medications can help control seizures, and various therapies can support developmental needs. However, the condition requires lifelong medical supervision, with regular MRI scans, kidney monitoring, and cardiac evaluations to track tumor growth and organ function.

The Broader Mission

Melany’s case exemplifies the broader challenges facing rural Yucatecan families dealing with complex medical conditions. Los Mayas Eternos takes a holistic approach to community challenges, working with local district leaders to respond to varied needs across Yucatan’s Mayan communities.

Tec continues to leverage his artistic platform for charitable causes, with recent photography exhibitions directing proceeds toward community support, including initiatives to provide shoes for children in Mayan communities.

The organization’s transparency in seeking medical specialist recommendations and obtaining proper permissions for sharing Melany’s story demonstrates their commitment to ethical advocacy and proper medical coordination.

How to Help

Community members interested in supporting Melany can contribute through several channels:

• Financial support: Donations through PayPal at paypal.me/themayaseternal
• Direct coordination: Contact via WhatsApp at +52 999-354-3904
• Volunteer transportation: The family specifically needs volunteers with vehicles to assist with medical appointments
• Medical expertise: Healthcare professionals who can provide specialist consultations

For families dealing with TSC, support organizations like the Tuberous Sclerosis Alliance provide valuable resources and community connections that can help navigate the condition’s challenges.

A Testament to Community

Melany’s story, while challenging, represents the strength found in Yucatecan community networks. Through Los Mayas Eternos and Pedro Tec’s continued advocacy, what began as an individual family’s struggle has become a rallying point for community support.

With early intervention and proper support, many children with TSC can lead fulfilling lives. For Melany, the difference may well lie in the community response that surrounds her family during these critical early years.

As Tec has demonstrated through years of service to rural Yucatecan communities, small acts of support can create meaningful change in individual lives. For Melany and her mother, even modest contributions toward medical care, basic supplies, or transportation assistance can provide the foundation for hope and improved quality of life.

Note: Los Mayas Eternos has received proper permission from Melany’s mother to share her story and is seeking medical specialist recommendations for her care.