Chattanoogan With Very Rare Disease Waiting For Bone Marrow Transplant

  • Monday, July 25, 2016
Billy Joe Williams
Billy Joe Williams

A 27-year-old Chattanoogan has been diagnosed with a very rare disease and is awaiting a bone marrow transplant.

Billy Joe Williams is among some 200 people in the world with IPEX Syndrome.

His father, Michael Williams, said IPEX Syndrome (immunnodysselectingregulation polyendocrinopathy,X link syndrome) causes an attack on the body's own immune system against the body's own tissues and organs. Early age onset of this disease in males causes severe enlargement of the secondary lymphoid organs, insulin dependent diabetes, eczema, food allergies and infections.

Mr. Williams said there has been limited success in treating the syndrome by bone marrow transplantation.

He said, "We are raising money to cover living expenses and other necessities that will be needed to for the six-month period he will be staying in Seattle, Wash., awaiting the transplant. His mom will be joining him to be by his side through the procedure. It will be a very long road for Billy. The whole process can take up to a full year before we truly see the full rewards.

"We are trying to gather the funds as soon as we can. The doctors want to do this transplant during the summer months to minimize the risk for infection."

The family thus far has raised $5,110 of a $35,000 goal through a GoFundMe page.

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