About Us

Desiray Joy is a young adult with down syndrome, who needed a Bone Marrow Transplant (BMT) due to Myelodysplastic Syndrome (MDS), a blood cancer that was discovered in October 2022. She would receive the diagnosis about 3 months after a trip to the emergency room for an unrelated matter, that ended with an emergency and surprising blood transfusion and a 4-night hospital stay.

She spent over 10 months going to Rady Children’s Hospital to the Hematology/Oncology clinic for labs, multiple transfusions, infusions, biopsies and more. Once they made the diagnosis, treatment continued as doctors realized that Desiray’s marrow was in failure and getting worse—she needed a BMT and was added to the National Marrow Donor Program (NMDP) registry to find a match.

In the summer of 2023 a generous, anonymous, American female donor was found who is a 9/10 match with Desiray. She was motivated to donate bone marrow to help save a life, is what the family was told by our BMT team. We have had the honor and privilege to meet her text and FaceTime, and are now connected and connecting. But no in-person meeting yet, as Desiray is on a different healing journey. ((Thank you, precious Aliyah, for helping to save Desiray’s life! We can hardly wait to get to meet you face-to-face)).

Desiray Joy was admitted for a long hospital stay in late August 2023 and received the new bone marrow on September 6th—affectionately known initially as Day 0 and forever as her Re-Birthdate. She is in the fight of her life and winning!

Her favorite color is pink, so her hospital room at Rady was accented with pink. This included a fancy, personalized, neon wall sign with her name on it, that she received as a gift from her godmother, Ms Robin. It makes a beautiful pink effect indoors, while boldly standing out to passersby day and night but especially after dark. Desiray and her family received so much positive feedback about this little light of hers that they decided to spread the love and let it shine to brighten up the lives of other BMT/Stem Cell Transplant patients at Rady, as an option.

To date there are over 2 dozen young patients who have received a personalized neon light from Desiray’s Lights of Joy, due to generous donations.

To celebrate her 1st Re-Birthday, Desiray’s Lights of Joy officially became a 501(c)(3) non-profit corporation in September 2024 and is now accepting donations.

Her website and social media presence is a work in progress as we nurse her to health for other chronic issues. Please follow her journey, donate and share it with others.

Thank you for visiting!