Tammi Creed

A family of six sits outside for a picture. There are two parents, and four kids

Hi! We're the Creed family. We have four kids, and our third child, Kaci, has an ultra-rare genetic disorder called PPFIA3-related neurodevelopmental syndrome. Kaci has had many challenges since she was born including Lennox-Gastaut Syndrome, severe developmental and cognitive delays, hypotonia, autism, macrocephaly and dysmorphisms. Without a diagnosis, we visited many specialists and did a lot of testing. We also moved around the country and experienced several different health care systems. However, for the last four years, we have called Dallas-Fort Worth our home and received great care for Kaci at Cook Children's.

While the journey isn't easy, I've been comforted by talking with other parents who have medically complex children. If you're struggling at any point throughout your child's diagnosis and treatment, please reach out to us. We'd love to help you as best we can!

- Tammi Creed