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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!
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).
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...
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...
What will you do with your one wild and precious life?
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