Team Rosalie

Our daughter Rosalie (born June 2, 2016) was diagnosed with a very rare, life-threatening genetic disorder called Joubert Syndrome & Related Disorders and COACH Syndrome at only 9 months old.  As our worst nightmare, Rosalie developed liver and bilateral kidney disease and one day might need a transplant. This syndrome causes end stage organ failure and many other complications such as; intellectual & developmental disorders, sensory-motor processing disorder, hypotonia (decreased muscle-tone), respiratory complications, visual issues that can lead to retinal detachment or blindness. There's no cure or prognosis. She isn't eligible for disability through social security. Our insurance is limited to where she can go and whats tests need to be done.  She needs testing and monitoring monthly for the rest of her life. It's been very crippling to our family, especially after having given birth to our second child in May 2017. Due to Rosalie's decreased muscle tone, she uses mobility equipment to help support her with learning how to stand and walk. My wishes are to help spread awareness for a further research and one day a cure, and  to find the support we need for our family.