Born with 26 fractures: OI- Brittle Bones

Born with 26 fractures: OI- Brittle Bones

“We went in for a routine 20 week ultrasound and 45 minutes went by. At the very end she said, “The baby’s legs are short. I can’t find the baby’s legs. I’m going to refer you to the bigger hospital.” They told us they thought he had a...
Natalie: Rett syndrome and facial differences

Natalie: Rett syndrome and facial differences

Natalie’s daughter Sophia is diagnosed with Rett syndrome, and facial differences. Natalie tells us, “During the ultrasound I was in shock. I thought “there is no way i’m strong enough to handle this. I can’t do this, I felt trapped and afraid.” I had four...
Jori and Dan: Autosomal Recessive Centronuclear Myopathy

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,...
Laurel and Jaron 18 P Deletion

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...

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