Paislee’s journey with SCA29

The story of Paislee

Our daughter, Paislee, was born with an extremely rare neurological disorder called Spinocerebellar Ataxia Type 29 all because her genetic coding misread one letter. We were told that there were less than 50 other cases known worldwide, ever. None of her doctors, specialists or therapists had ever heard of this before which was hard to hear as a parent. We wanted answers to help our sweet baby girl. We were told that her SCA29 diagnosis caused her to have cerebellar atrophy. Since her cerebellum was affected, Paislee has trouble with all gross motor skills like balance, coordination, motor planning, standing, walking, all fine motor skills, feeding, speech, vision, etc. We were told she might not live past 6 years old and if she did that she may never walk on her own. Luckily we have been able to connect with other SCA29 families through social media and have seen many children make amazing progress. We have also been able to help other families which have recently just been diagnosed. It’s nice to be able to answer families with the knowledge we have now. To give them hope by telling them she can now walk with a walker at 5 years old or that she is almost potty trained and starting the write letters, etc. brings us so much joy. Connecting with other rare families has been so helpful for us as well so we can advocate for our daughter and give her the best possible chance at life that we can give her. Paislee is a kind, funny, happy and strong little girl and we are so proud of the hard work she does everyday. We love you Paislee!