Changing minds and inspiring life…
despite a diagnosis.
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.
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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.”
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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...
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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...
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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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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.
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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!”
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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.
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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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Tamara and Matthew: Down Syndrome Follow Up 1 Year Later
There were suspicions in utero that their baby would have Down syndrome, but they didn’t know for sure until he was point. After a lot of study and then ultimately meeting their son with Down syndrome, they have decided Grayson is perfect the way he was born.
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Jennifer and James: Adoption of 4 Children with Special Needs
Internationally Adopted Children with Special Needs “We didn’t ever anticipate that were going to have ten children. It’s just that they’re ours, “James said. Four of those children are adopted and have disabilities, also not in the plans. The adopted children came...
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Good in Our Community – PKU Adoption
For this weeks good in our community post, I wanted to focus on an amazing family. The Smith family is the type of family that we all aspire to be. Kristi Smith was born with a condition called Phenylketonuria or PKU for short. PKU is birth defect that causes an amino...
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