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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
Sometimes the best therapy is knowing that someone else has been through it. Watch parent and sibling stories.
Local & National Resources
Browse resources submitted by loved ones facing similar diagnoses. Or if you have a resource, submit it online!
Born with 26 fractures: OI- Brittle Bones
They told us they thought he had a form of dwarfism based on his femur length. His femurs are shortened and curved, which is a marker for other conditions. At 32 weeks we got the results back that it was Osteogenesis Imperfecta- also known as brittle bones.
Natalie: Rett syndrome and facial differences
“I held her and I cried and the nurse held me and from that moment on I said “I don’t care about anything else other than protecting her and doing whatever it takes to keep her happy and safe and loved.”
Adrianne and Jason: Tetra-Amelia Syndrome
Adrianne and Jason had two biological daughters when they adopted their son and then their third daughter Maria from the Philippines. Maria was born missing all 4 limbs, a condition known as Tetra Amelia syndrome. Adrianne and Jason had no experience with someone...
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 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...
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.
What will you do with your one wild and precious life?
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