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.

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. As we celebrate his tenth birthday, we are filled with gratitude for how far he has come and for the kindness that has carried us along the way.

Cars for Courage

Because of his many hospital stays, Lucas has developed medical trauma. To help him cope, Child Life Specialists often use small prizes as encouragement, and Lucas’s favorites have always been Hot Wheels, Matchbox cars, and little playsets. These small tokens have brought comfort and distraction during challenging moments.

When we asked Lucas what he wanted to do for his tenth birthday, he did not hesitate. He wanted to give other kids in the hospital the same joy and comfort he had received.

Through Cars for Courage, our goal is to collect and deliver toy cars and playsets to children in hospitals to help them cope with tough appointments, surgeries, and hospital stays.

We hope you will join us in helping Lucas fill a wagon or two with cars, kindness, and courage.