Community rallies to raise awareness for rare disease

In a recent government meeting, community leaders and advocates gathered to raise awareness about a rare medical condition affecting one in 2,000 newborns. Latasha Martinez, a mother whose daughter has undergone multiple surgeries due to this condition, shared her personal journey, emphasizing the emotional and financial challenges families face. She highlighted the importance of early diagnosis, made possible by advancements in medical technology, which allowed her to learn about her daughter's condition at just 13 weeks into her pregnancy.

Martinez expressed gratitude for the support she received from the El Paso Hispanic Chamber of Commerce and its leadership program, \"Bordered by Change,\" developed in partnership with Wells Fargo. This initiative aims to cultivate leadership skills and community compassion, with Martinez's story serving as a focal point for this year's community project.

Desiree Mansonades, the public policy director of the chamber, echoed Martinez's sentiments, noting the significant costs associated with surgeries for this condition, which can reach hundreds of thousands of dollars. She emphasized the financial strain on families, particularly in a community where insurance coverage is often inadequate.

The meeting underscored the collective effort to bring attention to this rare disorder and the ongoing commitment to support affected families in El Paso and beyond.