Every Wednesday for the past six years, Ocean has received enzyme replacement infusions at Children's & Women's Hospital. Now, she is a thriving 9-year-old who loves to sing and dance and take exercise classes with her mom.
Soon after she was born, Ocean Kelly developed chronic health issues: ear infections that wouldn’t end, sleep apnea, and stiffness in her joints. A month before her third birthday, she was diagnosed with Hurler Syndrome, also known as mucopolysaccharidosis type I, a condition in which the body does not produce an enzyme that breaks down cell waste.
Every Wednesday for the past six years, Ocean has received enzyme replacement infusions at USA Health Children's & Women's Hospital. Now, she is a thriving 9-year-old who loves to sing and dance and take exercise classes with her mom. She will continue the weekly six-hour infusions for the rest of her life. While there is no known cure for the syndrome, treatment can prolong life expectancy and often alleviates some symptoms.
Ocean looks forward to the visits, her mom says, because of the exceptional care: “They have encouraged her to blossom. From the time she walks through the door of the infusion room until the time she leaves … she knows she is loved. They are excited to see her. They are interested in her. They let her know that as a person she is valued here, and that has been the best.”
