☆ Luca ☆ (2020-2020)

CACNA1E c.1054G>A (p.Gly352Arg)

 From the moment Luca entered our lives, he brought with him a joy and light that changed us forever. In just 9½ months, he filled our home and our hearts with more love than we ever knew possible. Though his time on earth was short, his impact was immeasurable.

When your child is born, you imagine all the things you will teach them. But with Luca, the opposite became true. Our sweet boy became our greatest teacher. He showed us what strength looks like, what courage feels like, and what truly matters in life.

Luca spent much of his life at MassGeneral Hospital for Children as we searched tirelessly for answers. At six months old, after countless tests and the unwavering dedication of his care team, he was diagnosed with infantile spasms. The severity of his seizures led to weeks of hospitalizations and further evaluations. Still, Luca faced every challenge with a bravery far beyond his years.

At eight months, we learned the heartbreaking cause of his struggles: an extremely rare genetic mutation known as CACNA1E. Even then, Luca’s spirit never dimmed. He had a smile that could brighten any room, and he touched every person who cared for him. Nurses and providers would lovingly compete for the chance to spend time with him — that’s the kind of light he carried.

On November 27, 2020, after months of extraordinary fight, our beautiful boy passed away. His courage, his gentleness, and his enormous heart will stay with us always.

We are eternally grateful for the gift of being his parents. We are proud of him — proud of his strength, proud of his resilience, proud of the love he brought into the world. Luca taught us more in his short life than we could have ever imagined teaching him.

He will forever be our brave, strong, loving little boy — our beacon of light.