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Just looking at lovely and lithe 13-year-old Savannah tells you that she could be a dancer, but what you don’t know is that she has suffered from a rare immune deficiency disease since birth, a disease that strikes 1 out of a 100,000.
For her first six years, Savannah was in and out of Wolfson Children’s and suffered from countless ear infections, sinusitis, asthma and other related illnesses. No one seemed to be able to identify the cause of Savannah’s frequent and debilitating health troubles.
One thing about children’s health needs that can be so different from adults is that pediatric providers often work together to care for children. Not having a local immunologist of the specificity that Savannah needed, Mom, Michelle, sought advice at Duke Medical Center where the reason for Savannah’s sickness was finally determined after months of testing. Illustrating the complexity of her illness, at first Savannah was diagnosed with Common Variable Immunodeficiency (CVID); then SCID or Severe Combined Immunodeficiency. Finally, Savannah was diagnosed with and treated for Congenital Agammaglobulinanemia, a genetic abnormality that blocks the development of normal antibodies in the bloodstream.
Since this discovery, Savannah’s life has changed. Treated locally by Dr. DeMarco and pediatrician, Dr. Shiree Sauer, Savannah hasn’t been in the hospital for three years and has learned to manage this life-long disorder herself with medications that are just right for her. On a daily basis, Savannah takes eight pills to help control her asthma, migraine headaches, and the possibility of infection. At home, she must give herself a subcutaneous treatment of gammaglobulin one time a week to boost her immune system. This alone takes two hours per treatment.
None of this prevents Savannah from dancing her heart out at least twenty hours a week. Ballet, point, tap, jazz…she does it all. In fact, seeing Mikhail Baryshnikov was her Dreams Come True desire, and Baryshnikov, although not able to be there, gave Savannah a party at his White Oak Plantation home complete with a signed, life-sized photo of the dancer and her favorite, cheese cake. The house and the chef were hers for a day!
Savannah also cares a great deal about Wolfson Children’s Hospital and its patients. She is a founding member of Kids Who Care, a kid-run hospital advisory board that is part of Wolfson’s commitment to family-centered care. She has helped develop a hospital survey for kids’ opinions and has even met with the architects of the new Wolfson expansion building.
“I like helping make Wolfson a better place, and I love making it a better place for the kids who are in the hospital now,” says Savannah, words reflective of this very special teen. |
