The story of Maureen
Our daughter Eva is 7 years old, a first grader who has just learned to read. When Eva was born, however, she weighed only 5 lbs, 7 oz. Within a few months, she began to experience several challenges. She struggled to maintain body temperature, was extremely sleepy, very “floppy”, and could not learn to roll over or sit up. It became very apparent that something was wrong. After further testing at Children Hospital of Pennsylvania, we learned that Eva had BH4 Deficiency which means her brain does not produce any dopamine or serotonin, amongst other defects. Due to modern research and medicine, this rare disease is known and several medicines even exist to treat it. Her physician was able to identify the right mix of medications for her and, one day at a time, Eva began to gain her strength. Seven years of intense PT, OT, and ST and 14 doses of medication a day and Eva is thriving. She approaches each day with a smile and a fierce determination to put her best foot forward. She is truly an inspiration and a reminder to be thankful every day.