Help Us Get Answers for Our Son Matthew
Our sweet son Matthew is just 5 months old, and his short life has already been filled with more medical challenges than most face in a lifetime.
Matthew was recently hospitalized after a terrifying episode at home, where he stopped breathing and turned blue. In those moments, I had to perform CPR on my own baby while waiting for help to arrive. He was admitted to Connecticut Children’s Medical Center and required time in the PICU.
Matthew has a rare and complex medical history, including:
• Heterotaxy syndrome
• Complex congenital heart disease, including a large atrial septal defect (ASD), interrupted inferior vena cava, abnormal venous anatomy, and sinus node dysfunction
• Severely enlarged right heart and pulmonary arteries
• Likely primary ciliary dyskinesia (a rare genetic lung disease affecting mucus clearance)
• Failure to thrive and severe protein-calorie malnutrition
• Severe eczema and multiple food and environmental allergies
During this admission, Matthew was battling Influenza A and Rhinovirus, which led to airway inflammation and mucus plugging on top of his underlying heart and lung disease. He experienced repeated episodes of breathing difficulty and oxygen desaturations and required high-flow respiratory support in the ICU. Thankfully, he stabilized and was able to come home — but this is far from the end of his journey.
Despite excellent care locally, Matthew’s condition is medically complex and rare. Given the severity of his heart and lung findings, his ongoing breathing struggles, feeding difficulties, poor weight gain, and the life-threatening episode he experienced at home, we are seeking a second opinion at Boston Children’s Hospital, one of the leading pediatric centers in the world for complex cardiopulmonary and genetic conditions.
This trip will involve:
• Travel to Boston
• Lodging near the hospital
• Missed work
• Ongoing medical expenses not fully covered by insurance
• Coordinating care across cardiology, pulmonology, gastroenterology, and genetics
As parents, our only goal is to make sure Matthew gets the most comprehensive evaluation possible and that nothing is missed. We want answers. We want a clearer plan. And above all, we want to give our son the best possible chance to grow, breathe, and thrive.
We are so grateful for the love, prayers, and encouragement we’ve already received. If you feel led to help financially, any contribution — no matter the size — will go directly toward medical-related expenses, supplies, travel, and helping us stay afloat while we navigate this ongoing care.
If you’re unable to donate, sharing this page or keeping our family in your prayers truly means just as much.
Thank you for walking alongside us during this time. We are incredibly grateful for every ounce of support.