Lindsey was full-term, no medical issues, healthy baby. She was smart, understood, played normal. She didn’t talk much by age 3 so we started speech therapy. At age four we had genetic testing for a baseline and was diagnosed. By age 4 1/2 years she lost her speech then physical abilities by age 5. At almost age 6, what normally happens over time, instead happened immediately to Lindsey’s brain stem. We spent 8 weeks in Chapel Hill; and a total of 10 months in/out of CH that first year. Lindsey had a trach and g-tube placed; later a broviac line and ventilator 24/7. Lots of issues, but Lindsey lived to be 21 years old.
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