Ala. Family Faces Unknown After Girl's Diagnosis

(AP) — A team of 20 doctors, scientists, nurses, specialists and nutritionists surrounded the 3-year-old, dark-eyed, curly-haired girl. To the medical community at Maryland's National Institutes of Health, Tyley Sue Jones, the only person in the world known to suffer from a specific chromosomal defect, represents a rare specimen. To her parents, the friendly little girl who loves to chase bubbles, swing and give hugs represents one of God's unique creations. "The doctor told us, 'If she continues to show signs of delay, come back,' " Tyler Jones said. The "wait and see" approach turned into action when, at Tyley Sue's two-year checkup, doctors noticed no signs of head growth. A nurse by trade, Ashley Jones scoured the Internet searching for medical journals mentioning the 11 p14.1 chromosomal depletion affecting her daughter. Ashley Jones had one — "How in the world do I balance hope and faith for her healing, yet remain realistic about her condition and prognosis at the same time?" The Joneses returned from Maryland with a recommended regimen of 20 hours of behavior therapy and three speech, occupational and physical therapy sessions a week. In August, Tyley Sue will begin classes at Danville Elementary School, which will provide at least one session of speech therapy a week. In their Trinity home, where crosses and messages of faith, ''hope and love fill the walls, Tyler and Ashley Jones watched as Tyley Sue jumped around the room with joy and greeted visitors with hugs.

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