Genetic testing solved Stilwell family’s medical mystery
STILWELL, KS (KCTV) — “Everything’s fine, everything’s normal.” That’s what a Stilwell family...
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Annabelle was diagnosed in January of 2016 at the age of ten. She is a fraternal twin and we suspected from...
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Strong community drives support for DDX3X research
Originally posted on Duke University’s Regeneration Next Mariah Hoye, a Regeneration Next Fellow and...
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Finding Our Tribe Has Made All the Difference as We Navigate Our Daughter’s Disability
Originally posted on The Mighty I sit here, on a plane, traveling back from San Diego where our family has...
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A Small Request to the People Who Pray for My Child With Special Needs
Originally posted on The Mighty My daughter Emelyn’s first year was probably the toughest emotionally....
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Newly Discovered Rare Disease Unites Parents, Researchers
Originally published in The San Diego Union-Tribune by Bradley J. Fikes More than 100 people gathered in...
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Lucy Douglas photo wearing a dark blue shirt and a helmet
Lucy Douglas
Our sweet Lucy was diagnosed in October 2016 with DDX3X. The pregnancy and delivery of Lucy was completely...
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Mason Platt on his wheelchair
Mason Platt
Mason was diagnosed in March 2017 with DDX3X and has been confirmed as ‘de novo’. He is now 7...
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Rose Michel
Rose was born the 3rd of May 2014 in Paris, France. We did not notice any initial developmental challenges...
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