Livie’s Story – Smooth Muscle Dysfunction Syndrome
Livie was born with Smooth Muscle Dysfunction Syndrome (SMDS), caused by a specific variant in ACTA2. Sadly she passed away just before turning two. To honor their warrior princess her parents and family have partnered with the John Ritter Foundation to work for a treatment and cure for this disorder to prevent other families from experiencing the same loss.
This video has been featured as a “Best of YouTube” and has been viewed over 55,000 times, bringing this rare disease into the mainstream.