Dear friends, family, and compassionate strangers,

We are reaching out with heavy hearts to ask for help for our 8-month-old daughter, Zelaya. After losing our first baby, Londyn, at 36 weeks two years ago, sharing this pain has been especially hard. Zelaya is our rainbow—bright, beautiful, and fiercely brave.

Zelaya has been diagnosed with neonatal Marfan syndrome, a rare and severe connective tissue disorder that affects her heart, blood vessels, and organs. This condition is extremely rare—it’s considered to occur in roughly one in hundreds of millions. She has already survived two cardiac arrests and requires continuous, intensive medical care. She feeds through a tube and has endured multiple surgeries, including an early operation to repair a congenital diaphragmatic hernia.

Recent testing shows her aortic root is severely enlarged, her heart chambers are moderately dilated, and she has moderate regurgitation of the tricuspid and mitral valves. Her right ventricle is enlarged but still functioning. Her medical team at Duke University Hospital has recommended urgent treatment—medications such as beta-blockers and losartan—and has initiated paperwork to begin transplant evaluation should her condition deteriorate.

To make the best decisions for Zelaya, we are seeking second opinions at Texas Children’s Hospital and Boston Children’s Hospital. Their expertise will help guide her care and next steps.

We were also recently told Zelaya needs surgery for sagittal craniosynostosis. Sagittal craniosynostosis is when the sagittal suture along the top of a baby’s skull fuses too early, causing a long, narrow head shape and potentially increasing pressure inside the skull. Surgery releases the fused suture and reshapes the skull so the brain can grow normally; options include endoscopic-assisted strip craniectomy (often followed by helmet therapy) or open cranial vault remodeling. The team will weigh timing and risks carefully because Zelaya’s cardiac condition affects anesthesia risk.

Why we need your help and how funds will be used

- Urgent specialized consultations and evaluations

- Travel and lodging for care at top pediatric centers

- Medications and ongoing hospital care

- Potential surgeries and transplant-related costs

We travel to Duke at least four times a month; it’s a two-hour drive one way, which adds significant travel, lodging, and transportation costs.

Zelaya’s big brother loves her deeply; we want to give them both a chance at a healthy future. Every donation will help cover the mounting medical and travel expenses as we pursue every available option for Zelaya.

About neonatal Marfan syndrome:

This severe form of Marfan syndrome presents early and can cause rapid cardiovascular decline, valve failure, and fragile blood vessels. Zelaya has already endured more than any child should, and we are committed to doing everything possible—even a transplant—to give her a fighting chance.

We waited to share her story while we processed our grief, but now we’re asking for your support. Thank you from the bottom of our hearts for your kindness, prayers, and generosity. Your help means everything to us and to our brave little girl, Zelaya.

With love and gratitude,

Zelaya Dream Team