for good. She is a fierce advocate by paving the way for future research to help others who may receive the same diagnosis.
Jessica is a single mom and the parent of two boys, Britton and Chewy. Britton was born at 28 weeks gestation weighing only two pounds and 14 ounces. He is 13 years old now and has had many health challenges, including a stroke and brain bleed which has resulted in Traumatic Brain Injury (TBI).
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.
“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 had two biological daughters and an adopted son when they adopted and their daughter Maria from the Philippines. Maria was born missing all 4 limbs, a condition known as Tetra Amelia syndrome. Tetra Amelia syndrome: Exceeding Expectations Adoption...
Jori and Dan have a very unique son named Luxton. He is one of three cases in the world that has autosomal recessive centronuclear myopathy type 5. Luxton however is the only one in the world that has two mutated genes. Autosomal Recessive Centronuclear Myopathy...
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. 18p Deletion He Started Missing Milestones “We assumed he was like any other kid until he started missing some mile markers. We started...
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.
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!”
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.
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.