Our journey began a little over ten years ago when Lucas was diagnosed with a congenital heart defect before he was even born. Because of its complexity, we transferred all of our care from Connecticut to Boston Children’s Hospital.

On a cold December day, Lucas entered the world, and soon after, we learned he might also have a genetic disorder. Tests confirmed Baraitser-Winter Syndrome, an extremely rare condition with only about fifty documented cases at the time. Sitting across from doctors who told us our newborn might never walk, talk, or have much quality of life, we were asked if we wanted to proceed with life-saving heart surgery. Without hesitation, we said yes. We knew we would give this little boy every chance at life.

Lucas had his first open heart surgery when he was just 8 days old to repair an atrial septal defect (ASD), ventricular septal defect (VSD), and coarctation of the aorta. He had his second open heart surgery, a subaortic resection of webbing in his left ventricle, just before he turned two. Since then, he has had many cardiac catheterizations and is currently treated for pulmonary hypertension. Despite everything he has faced, he is a happy, energetic boy who truly loves life.

What was supposed to be a four-to-six-week hospital stay turned into months of complications, additional surgeries, and eventually a trach and feeding tube to help Lucas breathe and grow. As first-time parents, we faced challenges no one could have prepared us for, but we were determined to give Lucas the best life possible.

After nearly ten months, we finally brought him home for the first time. Traveling with a ventilator and feeding pump became our “normal,” and we learned to find joy in the everyday moments. Over time, Lucas continued to face new surgeries and therapies, but he also reached milestones that once felt impossible. We learned to celebrate every single one.

Today, Lucas no longer needs a trach or ventilator and is working hard to eat on his own so he can one day say goodbye to his feeding tube. He is bright, funny, and full of heart, both literally and figuratively. He loves reading, riding his bike, and playing with friends. Lucas celebrated his tenth birthday in December, and we are filled with gratitude for how far he has come and for the kindness that has carried us along the way.

Please help us raise funds for It’s My Heart New England, an amazing organization supporting families of children with heart disease both in and out of the hospital.ry here.