Fox 4: Local families excited to see Children’s Mercy Research Institute expanding to new facility
By Sean McDowell
Looking at the angelic face of 4-year-old Emerson Schrivener, you’d never suspect anything was wrong.
Emerson’s mom, Destiny Moser, said Emerson is one of roughly 500 children in the world diagnosed with Niemann Pick Type C, a generic condition that, according to doctors at Children’s Mercy Hospital, could resemble Alzheimer’s Disease or dementia.
This family is one of many that’s excited to see the Chidren’s Mercy Research Institute expanding.
Dr. Tomi Pastinen, director of Children’s Mercy’s Genome Center, said his group employs hundreds of researchers who are hungry for methods of getting kids into treatments that can help them.
“There is definitely hope,” Pastinen said. “I think we have to think of rare diseases collectively. Most of them are unsolved. The grand prize for us is to give answers to those over two thirds of families who don't have answers today.”
“Our hope is that with research and science, we'll meet her where she's at, and it will be there before it's too late for Emerson,” Moser said.
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Learn more about the Children's Mercy Research Institute
Learn more about Genomic Answers for Kids at Children's Mercy