Find Hope with Orange Socks
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!
Regan: Goldenhar Syndrome
Matthew has three very rare abnormalities. He has been diagnosed with Goldenhar syndrome, agenesis of the corpus callosum, and an extra copy of his 78N22 chromosome. Now at 12 years old, Regan, Matthew’s mom, shares her experience with Matthew so far.
Danielle: DDX3X syndrome
Dani and her family fought hard to receive an official diagnosis for her daughter Hayden. After many specialists they finally received a diagnosis of DDX3X. So rare that there that at that time there were less than 500 people that have ever been diagnosed with this genetic deletion.
Parents Hoping to Outlive Their Children
When we work with patients with adult children at home with IDD, as appropriate, the topic should be broached regarding their plans. We need to educate ourselves on the support services available in our area. Often, parents have no knowledge of existing resources for them and their children. Armed with good information, we can help our patients plan for their children with IDD outliving them and help relieve their anxiety about it.
Glass Children: The Overlooked Siblings of the People We Treat.
We work with children, adolescents, and adults with chronic conditions: mental illness, medical conditions, intellectual or developmental disabilities. We do the very best we can to treat the patient, but what about their siblings? What about them?
Best Buddies
Chances are if you have a child with a disability, you have heard of a program called Best Buddies. While their most common program is creating friendships with people with disabilities and their peers, Best Buddies has several programs geared towards helping people with disabilities all over the world.
Carrie: Gervais syndrome, Cerebral Palsy, Autism, and SCN1A Gene Mutation
Carrie was only 22 years old when she received the unexpected news that her son, Luke, was born with several disabilities. She lived far away from family, and single was single.
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