Let's Raise Awareness for PURA Syndrome

Join me in supporting the PURA Syndrome Foundation!

Today we celebrate not only our two PURA boys but millions of other kiddos and adults who have a rare disease. Our oldest son was 1 in 200 when we found out he had PURA syndrome which took us 5 years to find out. Our youngest son we found out when he was two months old and was sent home on hospice. Today not only do we celebrate these kiddos/adults but we also want to share awareness. So many of these kiddos/adults don’t get the treatment or care they deserve. We can do better! Please take the time to donate or just share! Thank you!!