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There are others out there who know exactly how you feel.
Every four and a half minutes a child is born or diagnosed with a condition parents never dreamed would be their reality. If this is you, you’re in the right place. You’re not alone.
Stories
Local & National Resources
Jori and Dan: Autosomal Recessive Centronuclear Myopathy
When Luxton was born, he wasn't breathing, and doctors immediately called a code blue. An MRI showed brain bleeds, but doctors didn't know why. Jori and Dan were sent home to care for Luxton. At 3 weeks old, Luxton's oxygen and heart rate plummeted, so they rushed...
Laurel and Jaron 18 P Deletion
Laurel and Jaron's didn't receive a diagnosis for their son Shane until he was 4 years old.Shane is diagnosed with 18 P Deletion. He had Strabismus, which is a lazy eye, which was corrected when he was 2. . He has developmental delays so even though he’s a five year...
Katherine and Jeff: 2 with a Fatal Form of Dwarfism
Both of their daughters were diagnosed in utero with a fatal form of Dwarfism. They chose to continue with the pregnancy, and doctors couldn’t give them statistics, because everyone else they knew that received the same diagnosis chose to abort.
Sarah and Jeremy: Down Syndrome Adoption
While looking through adoption files from an orphanage in Yerevan Armenia, Sarah saw a picture of Maria, who has Down syndrome. Sarah told us, ” I saw Maria’s face, and I had seen many other faces over the years, and they are always just so cute and you want to adopt them all, but something was very different when I saw Maria’s face. It’s like God told me, “that’s your daughter, go get her!”
Living with a child with NONO Gene Deletion
There’s only a handful of kids who have been diagnosed with NONO gene deletion. Doctors can’t tell you what your life will be like, Morgan and Rikki can.
Perspective on Living with a Sister with Down Syndrome
Having a sister with Down syndrome is difficult at times but rewarding in so many other ways. All Corinne wants for her sister, Vanessa, is to be accepted.
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