Family shares experience on Rare Disease Day

GRAND RAPIDS, Mich. (WOOD) — Haylie Schneider may look like a child, but she is 18 years old.

When she was born, the obstetrician thought she may have dwarfism. After a seemingly normal pregnancy, it was the first indication something was wrong. 

By the time she was 2 months old, her parents realized she was not smiling or engaging like a typical newborn.

After years of countless appointment, doctors were unable to provide a diagnosis. Her parents would not get the answer for a long time.

Her mother, Denise Schneider, will speak at Helen DeVos Children’s Hospital Thursday — Rare Disease Day. The event aims to raise awareness about what patients and parents, like the Schneiders, go through.

"I used to ask myself, 'What did I do? What did I do wrong my whole pregnancy?' That has haunted me, honestly, for 18 years. You know, you just question yourself all the time,” she said.

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