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Topping woman with rare ‘bubble boy’ disease continues to lead productive life

Ann Jones (left) lives with her mother Joan Curtis (right) at Topping.

by Larry Chowning

When Ann Jones of Topping was 5 years old and had been diagnosed with Common Variable Immune Deficiency (CVID), her doctors told her mother, Joan Curtis, she would not live beyond age 11.

Her disease is better known as “bubble boy disease” made famous in a 1976 film “A Boy in the Plastic Bubble” starring John Travolta, and in 1986 when Paul Simon wrote the song “The Boy in the Bubble.”

CVID is a very rare immune system disorder in which the patient has a low level of antibodies that help fight off infections. The disease leaves one open to recurrent infections in the ears, sinuses and respiratory system, and increases the risk of digestive disorders, blood disorders and cancer.

David Vetter, a young boy from Texas, lived inside a plastic bubble and got the nickname “Bubble Boy.” Vetter was born in 1971 with a severe case of CVID and was forced to live in a sterile plastic bubble from birth until he died at age 12.

Fortunately for Jones, her disease is not as severe, but it has resulted in some life-long challenges. Modern medicine, family support, a strong belief in God and “a never give up attitude” have helped keep her alive and functioning.

When she was young, Jones was six feet tall, played basketball and caught a lot of colds, but was totally aware of the extreme seriousness of her condition. When she graduated from VCU in 1985, her mother told her that the doctor had predicted she’d have a short life.

“The blessed God chose my Mom as my mother,” said Jones. “She never held me back and let me live my life. She did not cripple me. She let me grow in every aspect. When I was sick, I had a protocol that we had to follow, but when I was well the sky was the limit. She never held me back from things.”

Read the rest of this story in this week’s Southside Sentinel at newstands throughout the county, or sign up here to receive a print and/or electronic pdf subscription.

posted 04.02.2014

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