Marlene Swanson is grappling with the loss of her daughter, Desiray. She passed away on June 16 at 21-years-old at Rady Children’s Hospital after battling blood cancer. Although Desiray was cured of that cancer, she contracted a chronic lung disease after receiving a bone marrow transplant and ultimately died a few months later.
“She is a light. She is Desiray Joy, truly lived up to her name, she is a joy,” said Swanson.
Dozens of people packed the Vesper Venue at Liberty Station on Saturday for Desiray’s Celebration of Life. During the event, Marlene wanted to honor her daughter’s life by doing what she loved to do most: dance.
“There’s really no way to describe the feeling, I know that sometimes my breath just snatches when I realize I can’t touch her, I can’t talk to her. I can’t see her right now on this side and that… that hurts so bad,” said Swanson.
Desiray’s Lights of Joy is a nonprofit organization that donates neon signs to young patients who have undergone bone barrow and stem cell transplants. It all started with a neon sign in Desiray’s rooms at Rady Children’s Hospital.
“It hung in her room day and night and she wanted it on 24/7. We would turn it off at night, in the morning if she woke up, one of the first things — even if she was weak, she’d say ‘light’,” said Swanson. “It started to affect people outside across from the Ronald McDonald House so people outside, they couldn’t come to this isolated area but they’d ask their colleagues, ‘What’s up with the pink light?’ and so it became a big buzz,” she added.
Desiray may be gone, but her friends and family know full well that she will never be forgotten. Swanson hopes the signs will be a beacon of hope for other patients and families who are going through a dark time.
“Even though she’s not physically with us here, but her light and joy continues to shine on in those windows, in those hearts and in all of those families and even passerbys,” said Swanson.
Desiray’s Lights of Joy is accepting donations so it can continue donating signs to those who want them. According to the organization’s website, 28 signs have been donated since its inception.