Riggs's Story

Our ZTTK miracle’s name is Riggs. He was born in November of 2012. His first hours of life were crazy and fast! He was born via emergency C-section in the middle of the night, air lifted to Sioux Falls SD Children's Hospital, then air lifted to Mott Children’s hospital in Ann Arbor MI where at 6 days old he underwent hos first of 3 open heart surgeries.

After his first surgery Riggs ran into complication after complication with his health. He was diagnosed with Hypoplastic left heart syndrome, failure to thrive, feeding difficulties, craniotabes, Shone's syndrome, unidirectional nystagmus, developmental delay, hypoglycemia and hypermobile joints. Riggs started out with our states Birth to 3 program around 6 months. We could not have been more thankful for this amazing program and staff. They were a blessing and helped Riggs and continue to help Riggs succeed!

After years of wondering and asking what is Riggs never seem to be up to Par with any mile Stones, we were sent to a geneticist and Riggs was put on a research group where his blood would be tested for different answers. In

2017 Riggs was official diagnosed with ZTTK-Syndrome. After years of wondering we finally had answers. Our doctor's recommended a Facebook page with other families who had children with ZTTK. The Facebook page was life changing and eye opening to us! We finally had met other families who could relate to us!

Riggs is now 8 years old, 100% G-tube fed, non-verbal and can do some basic walking skills. We definitely credit our amazing school district who has great therapists and staff for Riggs success. Riggs is in public school in the special education department and has had great success with them. We hope this small information about our son may help other learn more about ZTTK.