Family shares experience on Rare Disease Day

Grand Rapids

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.

Shortly after Haylie’s 18th birthday last year, doctors told her parents she was born with a Congenital disorder of glycosylation. It means she is missing one of the enzymes that are required for glycosylation, the complex process by which all human cells build long sugar chains that are attached to proteins. There are only about 20 people right now with a diagnosis like Hailey’s.

Denise Schneider hopes that by sharing their experience they can help other families find the peace that they have found, especially when it comes to doctors putting a number on life expectancy. 

“It gives us the opportunity to tell these young families who have just been diagnosed with the exact same thing (that Hailey) is 18. You have years ahead of you, that’s possible with that baby. Enjoy that baby every minute because God doesn’t choose to place kids like this,” said. Denise Schneider. “She’s been a huge blessing and has taught us a lot about life.”

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