Help Camila Get a Life: A Journey for a new Heart and Lungs

Our lives changed forever at 20 weeks pregnant when we were told our unborn daughter, Camila, had a severe congenital heart defect called Hypoplastic Left Heart Syndrome (HLHS). At the time, we were living in the Caribbean – right in the aftermath of Hurricane Maria. The devastation of the storm had already turned life upside down, and with no local specialist equipped to treat HLHS, we were faced with the heartbreaking decision: we had to leave our home and relocated so Camila could receive the care she needed.

Once relocated and under specialized care, doctors discovered another rare and serious complication: total anomalous pulmonary venous return (TAPVR) – all four pulmonary veins do not connect normally to the left atrium. Instead, the four pulmonary veins drain abnormally to the right atrium through an abnormal connection. So when Camila was born in the summer of 2018, and just after three days of life, she underwent her first open-heart surgery (the Norwood procedure). She spent the first four months of her life in the hospital and had a second open-heart surgery (the Glenn procedure) during that time. To complicate things further, Camila’s TAPVR lead to pulmonary vein stenosis – a narrowing of the veins that return blood from the lungs to the heart. Since then, Camila has endured multiple procedures to try to open her narrowing veins and improve her oxygen levels, but nothing has worked long term, resulting in Camila using a single lung. Over the years, her oxygen levels have slowly declined, and now simple playtime with other children leaves her exhausted and breathless.

We recently learned that because of her worsening vein condition, Camila is no longer a candidate for the final stage of HLHS surgery (the Fontan procedure). Her only remaining option is a heart and lung transplant – a terrifying but necessary step to extend and improve her life.

The hospital has done everything they can, and we are now searching for transplant centers across the country that may be able to help. This means more travel, temporary relocation, and mounting costs. Jackeline has put her career on hold to care for Camila full time, and we’ve reached our health insurance out-of-pocket maximum every single year.

We are asking for $22,000 to help cover:

· $17,000 toward Camila’s uncovered medical expenses including medications.

· $5,000 for travel to out-of-state hospitals and transplant evaluations

Camila is a bright, sweet, and resilient 6-year-old who loves to dance, laugh, and color. She deserves a full life, and we are doing everything we can to give her that chance.

From the bottom of our hearts, thank you for reading, donating, or simply sharing Camila’s story. Every act of kindness makes a difference.

With gratitude,

Camila’s family