Julius "Juju" Leggs McClary

Our CLN2 Warrior Juju

December 19, 2016 – May 24, 2026

On May 24, 2026, Pentecost Sunday, our beautiful baby boy gained his angel wings after courageously battling CLN2 Batten disease, a rare and devastating neurodegenerative disorder that slowly steals away a child’s abilities. Yet despite every obstacle placed before him, Juju continued to shine with a light so powerful that nothing, not even this cruel disease, could ever take it away.

There is something deeply spiritual about the day our warrior transitioned into Heaven. Pentecost symbolizes peace, faith, renewal, and the presence of the Holy Spirit. While our hearts are shattered by this unimaginable loss, we hold onto the comfort that Juju left this earthly world on a sacred day surrounded by love and carried gently into eternity.

Juju was not defined by CLN2.

He was defined by love. By strength. By resilience. By innocence. By a smile capable of healing hearts without saying a single word.

From the moment Juju entered this world on December 19, 2016, he changed the lives of everyone around him. His spirit was magnetic. Pure. Gentle. Comforting. He carried something within him that made people instantly feel connected to him. To know Juju was to love him deeply.

Even through years of hospital stays, infusions, therapies, feeding tubes, seizures, surgeries, emergency visits, setbacks, and moments no child should ever have to endure, Juju continued to fight with unimaginable courage. Through every painful chapter, he remained a warrior with the brightest smile and the softest soul.

And he fought beautifully.

Juju loved music, cartoons, cuddles, family time, and making people smile. Boss Baby was one of his favorites, and his laughter could light up an entire room. The simplest moments with him became the most meaningful memories for those lucky enough to experience his love firsthand.

His life taught everyone around him lessons that many spend a lifetime trying to understand. He taught us patience. Strength. Gratitude. Faith. He taught us to celebrate the smallest victories and hold tightly to every moment. Most importantly, he taught us what unconditional love truly looks like.

Juju was deeply loved by his devoted mother, Cristina, and father, Jonathan, who dedicated their lives to fighting beside him every single day. The love between Juju and his parents was fierce, unconditional, and unbreakable. He was the center of their world, their greatest purpose, and their most precious blessing.

He also leaves behind siblings, grandparents, relatives, teachers, therapists, nurses, caregivers, advocates, and an entire rare disease community that became family throughout this journey. His life united people from all walks of life through compassion, advocacy, awareness, and love.

Juju’s story became much greater than one family’s journey.

His strength inspired people across the rare disease community and beyond. Through his journey, awareness was spread, conversations were started, and lives were touched in ways words cannot fully explain. Juju became a voice for children fighting battles they never chose.

And although his earthly journey has ended, his mission never will.

Juju’s legacy will continue to live on through advocacy, raising awareness, research efforts, and the ongoing fight for a cure for CLN2 Batten disease. His foundation, his story, and the love he gave this world will continue inspiring change for years to come. His mother and family have promised to continue fighting in his honor so that one day no other child or family has to endure the pain this disease causes.

Juju’s name will continue to be spoken in rooms that matter. His story will continue reaching hearts around the world. His legacy will continue pushing for awareness, action, research, and hope.

Because warriors like Juju never truly leave us.

While our hearts ache with a pain words cannot describe, we find peace knowing our sweet boy is no longer suffering. His earthly body may have grown tired, but his spirit never will. We know he is now free from pain, free from limitations, and finally able to do everything this disease tried to take from him.

We imagine him now running freely through Heaven with the biggest smile on his face. Dancing. Laughing. Playing. Watching over all of us with the same beautiful spirit that carried him through life.

Even now, Juju continues sending signs of love to those closest to him, reminding us that souls this special never truly disappear. Love like his cannot be confined to this world alone.

Juju was more than a child battling a disease.

He was love in human form. He was strength wrapped in innocence. He was hope. He was purpose. He was our warrior. He was our miracle. He was our heart.

And he always will be.

Our CLN2 warrior Juju will forever remain the light behind our family, the strength behind our advocacy, and the soul that changed our lives forever.

Forever loved. Forever missed. Forever our warrior.

Until we meet again, sweet boy.