Stefani and Kevin were excited with the birth of their daughter Scarlett. Stefani’s pregnancy had been completely normal and they were expecting a healthy child, but right away there were worrisome signs. Scarlett was tiny and from the beginning she was plagued with cyclical vomiting, re-occurring episodes of intense vomiting. Initially she was diagnosed with reflux but the treatment didn’t really help as expected. Scarlett did not develop normally and at the age of 5 months she was hospitalized when it was discovered that she had a heart murmur and an enlarged liver. An MRI demonstrated damage to Scarlett’s brain which explained the delay, but the cause of the damage was unknown. A liver, skin, and muscle biopsy indicated that Scarlett had some kind of metabolic disease. For the next several years Scarlett saw ten different specialists. Scarlett has had complications involving multiple organ systems and many hospitalizations. Finally at the age of eight, Scarlett was diagnosed with Mitochondrial Disease. Mitochondria are found in every cell of the body except red blood cells and are important in converting the energy of the food we eat into the energy that powers the cells. Mitochondria are critical to cell function so dysfunctional mitochondria can cause a wide array of problems.
Because of her weakened immune system Scarlett caught the H1N1 virus and has had increased respiratory problems since. Home based palliative care became involved with Scarlett and her family around this time. Stefani says this service has been very helpful. “The best part is that there is a team that knows Scarlett and her history that I can call 24 hours a day with concerns or questions. I don’t have to call the pediatrician at home on Sunday afternoon!” Scarlett is visited by nurses, a social worker and a chaplain.
Fourteen year old Scarlett is a very happy young woman and something of a social butterfly. She loves school, church, music, swimming, bowling, people, Disney World, and pink and purple! Her ready smile greets everyone she comes in contact with.