Vanna

Birthdate:          08/28/00
Diagnosis:          liver transplant in 12/04- currently waiting for 2nd liver transplant
 

Address to send small gifts:

PO Box 57
Weaverville, NC 28787

Sibling's  & Other Info:

Brother: EJ - Birthday 12/28/1990

EJ's Interests: drawing, harry potter, reading, stars wars.

PetInfo: Rocky is a 5 month old boston terrier.

  Vanna

In 1998 I gave birth to twins boys. They were strong and doing great! At 4 days old they became less active. The doctors knew something was wrong but all the tests came back negative. Their health continued to decline with no answers. They were put on life support and finally the answer came. They both had a rare genetic disorder called citrullinemia. It was too late to save them.

Two years later I became pregnant again with a 75% chance of having a healthy baby. I had prenatal testing performed that concluded our daughter also had the rare disorder. Plans were made for her to be born at a hospital four hours from home under the care of a doctor who had some medical experience and knowledge of the disorder. Because the disorder effects the liver we knew she would have to have a transplant at some point in her life.

2004 was not a good year for Savannah. Her health was declining with each episode she had. We knew it was time to transplant. After two commas that year she was finally listed in August. December 9, 2005 at 2:00 am we "got the call." At 11:00 am Savannah was rolled into the OR for her life saving transplant. The first week or so she was doing terrific. Then all of a sudden she became ill with a GI Tract infection. It was a domino effect after that. She had intessuption in her intestines three times, both lungs collapsed and hemorrhaged twice, three rejection episodes, RSV and other numerous infections. All that was in the first 9 weeks. Since, she has had chronic rejection, bile blockages and many many hospitalizations. She is now awaiting her 2nd gift of life with another transplant. No matter how bad Savannah feels, if she gets a card or note in the mail it will make her smile. That alone makes my day!
 

Interests: arts & crafts, dora the explorer, blues clues, reading, reading & more reading!

Other Info:  hopefully she will get to start kindergarten in this fall if her health permits!