Age | 14
Photographer| Lisa Uesugi
We called my brother “Bulla Boy.” He was diagnosed with Battens Disease when he was three. I massaged his head to help calm his seizures. His doctors said that he wasn’t going to live past three but he proved them wrong and lived until he was twelve. Bulla couldn’t do anything fun but he was happy anyway and the little things made him happy like being with my mom and taking his bath. He couldn’t walk or talk but he did go to school and on fieldtrips and brought artwork home. Bulla made me feel like I needed to live life and not complain about the little problems. He gave us reason to not just sit and do nothing. Every year we gather as a family to pray at the beach where we had his funeral and scattered his ashes. “Bulla, you’re the most special brother I’ve ever had.”
I am outgoing, funny and smart.
I can draw and cheer up my friends and family.
I will be very positive in helping my mom in the future.
Cici captured the memory of her older brother, Bulla, in this photograph. She shows her oldest sister, Alexis, showing the youngest member of our family, PJ, Bulla’s pictures. Bulla died at the age of 12. During his short time on this earth, he taught our family about unconditional love. “Cici” was Bulla’s little nurse and she loved him very much. He adored her even though he couldn’t speak or see her. She would read to him, help with bath time by washing his hair and singing to him. When he started having seizures, Cici was able to help stop them by massaging his head until he calmed down. I am so proud of Cici for the tender loving soul she has turned out to be and for taking on so much responsibility to care for a terminally ill sibling. My dream for Cici is that she continues to be a caring and loving individual and, that all of her dreams and aspirations come true. “Cici, thank you for being such a great sister to Bulla. He is in a much better place and now, it’s your turn to be a kid and enjoy your childhood. Just don’t grow up too fast!”
Toni Avrett | Mother