Luca’s Story

As told by his mother

Luca’s life has been complicated, scary, and difficult.

When Luca was born, my wish for him was to experience typical newborn things. To be fair, I wanted to experience them too. Instead, we lived in the hospital, we watched the world pass us by behind the glass, and we waited for better days.

Luca was born as a “bubble boy.” At five days old, he entered strict medical isolation due to his rare genetic condition. Complete DiGeorge Syndrome. CDS is primarily characterized by an absent thymus, called athymia. The thymus is the epicenter of the immune system, without it babies cannot survive. Our lives would be on hold until after a thymus transplant and his immune system fully reconstituted.

Life in isolation, predominantly spent living in the hospital is not a life that any child deserves. It wasn’t until Luca was 21 months old that we were able to leave his life of isolation behind. Finally, it was time for him to get to experience a taste of what life could offer.

A Kid Again came into our lives and it was a breath of fresh air. 

Little did I know just how refreshing the organization was going to be for us, the impact it would have on our mental health, and how important Adventures would be for us.

Our first outing was Capes & Crowns. 

It was like Capes & Crowns was meant to be our debut event, as Luca is the strongest superhero I have ever known. We arrived at Kings Island and braved the unseasonably cold weather and the rain with smiles on our face. We were surrounded by kids ad their families who were just like us. That sense of belonging caught me off guard, and I became so happy for the rain. I didn’t have to explain the tears of joy on my cheeks. 

As the Adventure went on, Luca blossomed before my eyes. 

His cape billowed in the wind, his smile was radiant, and he walked around the park happy to be with his peers. I felt seen in the best way, and finally I didn’t have to explain our life or pretend I didn’t notice whispers or stares – there weren’t any.

That day is a core memory for us now. It was everything I would have wished for and so much more. 

A Kid Again doesn’t just give Luca a chance to be a kid, it gives me the chance to just be a parent. I will always be a medical mom, but when I’m at an Adventure, I’m just a parent. Just like everyone else. A Kid Again linked us to a community that we love — people who understand the struggles and celebrate the little things just like we do. A Kid Again brings joy to our days, happiness when life is heavy, and peace when we can relax and just be ourselves at Adventures.

Our introduction to A Kid Again gave me hope, and after our first Adventure that hope turned into a deep appreciation, a passion to give Luca more of the experiences he had been missing, and a sense of pride that we were joining the ranks of other incredible kids and their families.