Six-year-old Rose was diagnosed with Sanfilippo Syndrome, a rare genetic disorder, that affects her brain and spinal cord. Rose also has cognitive developmental delays that greatly impact her quality of life. Rose’s Mom, Muna, says finding out Rose’s diagnosis at age two was an incredibly difficult time and pushed the whole family, including big sister Cecilia, in a completely different direction. Their future held many doctor’s appointments and coming to accept that Rose may have limitations that other children do not. The hardest part was accepting the uncertainty of having a young child with a very rare disease. But Muna says she is always inspired by Rose’s grit and positivity. “Through it all, she lights up a room. She’ll be waiting in a doctor’s office singing and dancing.”
Like any parent, Muna wants Rose to have as many life experiences as possible and to feel the joys of childhood. Vivacious Rose has always loved princesses and waving to people, which made being a princess for a day and waving to her royal subjects the perfect wish! Make-A-Wish Greater LA reached out to our friends at the Tournament of Roses to help grant this magical wish. On a gorgeous, sunny day in Pasadena this October, the community came out in droves for the coronation of Princess Rose. She was welcomed by the Royal Court, including Rose Queen Camille who gave her a royal makeover, complete with custom princess dresses for Rose and her sister. Then Rose was showered with Frozen-themed princess gifts (her favorite!) before she was whisked off to a tea party complete with rose-infused tea from the famed Langham Hotel and all the sweet treats she could eat. The sound of trumpets beckoned her to the front stairs of the historic Tournament House, where she was surprised to find hundreds of well-wishers who came out with signs to cheer her on. Here she was fitted with her new crown and coronated as Princess Rose of Pasadena. A Pasadena Police Officer even served as her Prince Charming and escorted her to a horse-drawn carriage, which drove her around the kingdom of Pasadena. Rose squealed in excitement the entire day and sang along to her favorite songs while waving to her royal subjects.
Of Rose’s incredible wish day, Muna says, “That day, Rose really believed herself to be a princess. It is so important to me that Rose is seen and valued even though she is different. Make-A-Wish isn’t about where she’ll be with her illness in ten years. It’s about seeing and valuing who she is today. Forever I will remember the other Royal Court princesses singing to her that day. It is one of those forever memories for our family.”
A special thank you to the Rose Parade, Pasadena Police Department and Langham Huntington for helping us make Rose's day a special one!