Savannah’s lifetime of waiting

Seventeen-year-old Savannah Smith is ready for her senior prom. She and her friends have spent hours coordinating dress colors, planning dinner and limo reservations, and anxiously hoping they would find dates.  Everyone was eager to celebrate the almost-end of their senior year together. On the outside, Savannah is a smiling, radiant teenager with the most positive outlook on life. But you would never guess that she is in the fight of her life.

Savannah in the snow

Savannah experiences snow during her stay in Baltimore.

Savannah was born with biliary atresia, a rare liver disease that can lead to complete liver failure. Given a life expectancy of just three years, she underwent the first of many surgeries at just five weeks old. Savannah spent most of her infant and toddler years in and out of the hospital, fighting numerous liver infections.

Most children on the transplant list receive a new liver between the ages of three and five; Savannah has been waiting her whole life for a match, and now at the age of 17, her family is desperate.

Savannah’s health began getting worse in the spring of 2013, at which point her doctors in Louisiana felt they were out of options. A small glimmer of hope was the Johns Hopkins Children’s Center in Baltimore, MD, a multi-specialty hospital that might be able to, at last, help Savannah.

Savannah and Mackenzie

Savannah and Believe In Tomorrow staff member, Mackenzie, who became close friends during her time in Baltimore.

Savannah is only the third documented person in the world to have such a severe case of biliary atresia, which would be greatly helped by a liver transplant. Because of the disease, she has also developed additional medical issues, including immune disorders, thyroid issues, blood sugar issues, juvenile arthritis, longtime elevated liver enzymes, neurological issues, brain damage, and elevated cancer levels. If tests show that she has developed cancer, any hope of a transplant will have to be postponed until cancer treatments are completed.

Throughout such a rough journey, Savannah’s mom, Shelley, was beyond relieved to find a home at the Believe In Tomorrow Children’s House at Johns Hopkins, where they have stayed for the past two months. “It is so wonderful; we are so blessed to be here, and the staff has simply become family,” she said.

Trying on dresses

Savannah trying on prom dresses with new friends.

When staff learned that Savannah might not have time to find her dream prom dress because she would be in and out of the hospital leading up to prom, they jumped into action. A local boutique shop owner, Karen Mazer of Synchronicity, knew right away she wanted to help. With one of her best friends alive today because of a liver transplant, she felt aligned with the cause and immediately became enamored with Savannah.

Mazer spent hours getting to know Savannah, her fragile and unique situation, and what her dream dress might look like. She combed through hundreds of dresses before selecting six that fit Savannah’s criteria. The next day she rushed back to the Believe In Tomorrow Children’s House, potential dream dresses in hand. Savannah modeled dress after dress for her mom, Karen, and several staff members and friends, all who helped her choose the perfect one to make her senior prom dream a reality.

Savannah could not attend school for much of her senior year, but she did go enough to be named Homecoming Queen last fall. She misses her friends terribly, so keeping the dream of senior prom alive by finding a dress has kept her going, one day at a time.

“She had the BEST time finding the perfect dress,” said Shelley. “That just made her day. She was so blessed and excited, and she has talked about that moment to somebody every day since then.”

Update: Savannah made it back in time to celebrate senior prom with her friends, and, after so many years of waiting, received a liver transplant on May 31, 2014! She is doing well.