When Julieta was just 1 month old, she was diagnosed with Spinal Muscular Atrophy type 1 (SMA Type 1). SMA is a rare genetic condition that causes muscle weakness and atrophy, significantly impacting Julieta’s ability to walk, sit up, and control her head movements. It also affected her ability to speak and eat. Julieta’s mother, Melissa, recalls the initial shock and heartbreak that accompanied the diagnosis: “After I got the call with her results, I was told by five neurologists that she was not going to make it past 1 year of age. Obviously, this put me in a sad and grieving mental state. We as a family were devastated.”
Shortly after receiving her diagnosis, Julieta was referred to Nemours Children’s Hospital, Florida by a neurologist in Miami. “After I visited Nemours and felt finally safe and with big hopes for my daughter, I went back to Dr. Miller in Miami to thank him for his recommendation,” shares Melissa.
From that moment on, Julieta found herself under the care of a dedicated team at Nemours Children’s, each playing a crucial role in her journey. Julieta’s care team is extensive, encompassing specialists from across specialties. Melissa emphasizes the collaborative spirit among these experts, “All of her specialists communicate with each other and again work together to help succeed whatever we are trying to accomplish at the moment.”
Julieta’s care team includes neurologist Dr. Omer Abdul Hamid, neuromuscular program coordinator Rulla Star, nurse Wendy Leon, and Rebekah; pulmonologist Dr. Navas; ENT specialist Dr. Cervantes; GI specialist Dr. Palomo; orthopedic surgeon Dr. Ryan Ilgenfritz; physical medicine rehabilitation expert Dr. Ocasio; nutritionist Kelly Bell; physical therapist Brittany Canyock; speech therapist Maylynne Diaz; occupational therapist Kathleen Soltis; and primary care physician Dr. Christina Schultz. “Julieta’s care team is awesome!” says Melissa. “They all truly care and go above and beyond for her. As a parent, I feel peace of mind knowing that she is in good hands. They all listen to her and me. We all make plans for a near and far future and work together to continue achieving big things for her.”
Julieta began her journey with speech language pathologist Maylynne when she was just 4 years old. Maylynne recalls the early days of working with Julieta, sharing, “When I started here, they had just moved from Miami to Orlando to seek services for her condition. We became very good friends because I moved to a complex next to them and they were by themselves here. Julieta was my patient for a year and half. After that, we would see each other here in Rehab because she receives all disciplines. We became close!” This proximity and the shared experience of adapting to new surroundings in Orlando helped solidify their connection.
Over time, Julieta expressed a heartfelt wish: to be a flower girl at a wedding. When Maylynne got engaged, she knew she wanted Julieta to be a part of her special day. “I have a soft spot for her,” Maylynne shares. “When I got engaged, the only sure thing I knew for my wedding was that I wanted her to be my flower girl.”
The journey to fulfilling this dream was filled with excitement and meticulous preparation. “We didn’t tell her until like, one month before because when she gets very excited, she doesn’t really sleep,” Maylynne shared with a smile. They prepared a special moment to ask Julieta, complete with a flower balloon and a personalized card. “She was very excited, you could tell she was happy.”
In the lead-up to the wedding, the entire Nemours rehab staff got involved. “She practiced in the hallway on our fifth floor. Everyone knew she was going to be a flower girl. It was a whole thing,” Maylynne recalls fondly. Therapists worked with Julieta to help her practice throwing flower petals, ensuring she was ready for her big moment.
On the wedding day, Julieta, then 9 years old, carried out her role as the flower girl with grace and joy, a testament to her determination and the support of her care team. “She did a really good job,” Maylynne proudly notes. The moment was not only special for Julieta, but also deeply meaningful for Maylynne. “Knowing that I have the ability to make her feel special, to make her feel loved, and to also make her feel that she can do what other kids can do, makes me feel good on the inside.” Reflecting on the experience, Maylynne emphasizes the importance of small acts of kindness and their lasting impact. “If I can make someone happy by doing something simple, why not? It was something that I know was going to be memorable for her.” This sentiment encapsulates the mission of Nemours Children’s Health: going well beyond medicine to touch lives in meaningful and compassionate ways.
*In addition to the care team mentioned above, Julieta and her family would like to extend a special thanks to Dr. Richard Finkel, who Julieta started seeing when she first came to Nemours Children’s.
