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Child With Rare Disease Undergoes Cord Blood Transplant

Internet Search Sends Oregon Family To North Carolina

UPDATED: 3:13 pm EST January 17, 2005

Many people believe stem cells are a key to treating previously incurable diseases.

Duke University Medical Center in Durham, N.C., is among those leading the way, especially in the use of stem cells found in umbilical cord blood. An Oregon family hopes those cells will save their daughter's life.

Stem Cell Olivia
Mark and Annalee Medici of Oregon hope the cord blood stem cells will save the life of their daughter, Olivia.

Olivia Medici is celebrating her 4th birthday. Her biggest gift she could have received was a group of cord blood stem cells, reported WRAL in Raleigh, N.C.

Mark and Annalee Medici, of Oregon, hope the stem cells will save their daughter's life. Olivia has a rare form of mucopolysaccharidosis, or MPS. She lacks the enzymes needed to digest complex sugars.

Since she was born, Olivia suffered constant ear and sinus infections. She was not developing properly with walking and speech. It was last August when they discovered what was wrong.

"Without treatment over time, the disease will mentally retard her, will incapacitate her because she will not be able to walk and eventually will kill her," Mark Medici said.

Olivia's parents were told there was no treatment, but Mark Medici checked the Internet, which led him to Duke.

Olivia
Olivia has a rare form of MPS or mucopolysaccharidosis. She lacks the enzymes to digest complex sugars. The stem cell transplant may save her life, but it may or may not improve her mental or physical development.

"For Olivia, the transplant is going to do two things. It's going to give her a population of cells that her body will continuously reproduce and which will make enzyme in her blood," said Dr. Joanne Kurtzberg, director of the Duke Stem Cell program.

The stem cell transplant may save her life, but it may or may not improve her mental or physical development. Nothing is certain, but the cost is close to $1 million.

"Yes, it's expensive, but you know what? You do it for your child," Mark Medici said.

The Medicis' story is attracting financial help from people back home and others around the world. They do not expect to be back home until midsummer, followed by regular visits back to Duke for tests.

"It's going to be a long haul, but I'm telling you. Today was worth it. To watch those cells going into her body was amazing," Mark Medici said.

Olivia is just the 15th child in the world to receive a cord blood stem cell transplant to treat her form of MPS.

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