Changing minds and inspiring life…
despite a diagnosis.
Twin girls with Cri Du Chat syndrome
Stacy said that her daughters have been a blessing from the beginning but that she had to adjust her thinking to a different path than what she had expected. Now they are just “Sydney and Logan. Stacy tells us, “They are actually easier to raise than my other two daughters who are non-delayed.” Despite the challenges they know it is worth it. “Everyone has problems, you just have to adjust…They are worth it. I wouldn’t give up anything. I love coming home…,” said Terry. He loves that his twin daughters still live at home and he gets about 20 hugs a day from them.
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Cathy McMorris Rodgers and Brian Rodgers: Down syndrome
Cathy McMorris Rodgers and her husband Brian Rodgers found out their son Cole had Down syndrome at his birth. “It was tough. The doctors laid out a lot of things and it was very difficult. The fear of the unknown is what is overwhelming in that moment. Go talk to other people, don’t make an isolated decision. Educate yourself, I remember when we go the news about Cole, that so much of it was focused on the negative. It was focused on what health issues he may have or other challenges. Rather than really being told what the potential was.”
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A long road for a Lifetime Caregiver, but a full heart
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).
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Resource: Special needs parenting when your partner is abusive
For this Good In Our Community feature, we're featuring Betrayal Trauma Recovery. This is a great resource for anyone that is parenting a child with special needs, that has a parter who is abusive. Here is a blog written by their founder, Anne Blythe: We all know...
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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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