Braulin’s family found out about their son’s diagnosis during Gissette’s pregnancy. Gissette noticed that her local doctor was sending her to do more sonograms and measurements than she had for her previous pregnancies, making Gissette nervous. It was during this time that her care team informed her that Braulin was diagnosed with dwarfism.
After receiving the diagnosis, Gissette decided to explore new care options with experts that specialized in dwarfism. “In my country, the Dominican Republic, there wasn’t much information about how to treat or care for a child with dwarfism,” shares Gissette. “I had a lot of questions but no answers. This is when my journey of looking for answers on the internet started.” Through her research, Gissette was able to connect with other parents navigating dwarfism and Little People of America.
Once Braulin was born, Gissette took several trips to the United States with Braulin to receive specialized treatments for his complex needs. The family ultimately chose to relocate to Florida after multiple moves around the United States and numerous medical consultations nationwide. In Orlando, they quickly established a connection with Nemours Children’s Health, Florida. “My experience with the staff at Nemours has been amazing,” shares Gissette. “They are very welcoming, understanding, patient, and loving with us. The nurses are open to questions and the doctors are always there when you need them. The experience we have had with their PTs and OTs is beyond amazing. My son has learned so many things since his first appointment with them, they push him to get the best of him.”
In April of 2021, the family met with Dr. Jason Malone and the orthopedics team to discuss the possibility of an arm-lengthening surgery for Braulin. After thoroughly discussing the options and benefits, the family decided to move forward with surgery that summer. “After this surgery, my son became a bit more independent,” shares Gissette. “The care that Dr. Malone provided my son and the communication he had with him made Braulin more curious about the lengthening of his legs as a possibility for the future. Until one day, my son asked Dr. Malone if he could perform the surgery. He had the surgery in July of 2023, which consisted of external fixations for the tibias and internal rods for the femurs. Two years later, he decided to do his second leg lengthening, which consisted of internal rods for both the tibias and femurs.”
“For me, these surgeries are life-changing,” says Braulin. “Even though they look scary, they help with so much. The doctors and nurses at Nemours are nice and always there for you, and they always respect your decisions.” Through their story, we see the importance of seeking expert care and the impact it can have on a child’s quality of life. “You can put your trust in the doctors at Nemours,” says Gissette. “If you have questions, they are always open to answer. If you need them to explain things, however many times you need them to until you fully understand, they will. When they are with you, they are with only you.” Braulin’s surgeries and therapies have not only improved his physical abilities but have also instilled in him a sense of independence and confidence.
