The story of Victoria Arreola
Hello, my name is Victoria. I am a rare disease single mom advocating for my son who is now 7 years old. My son was first diagnosed when he was an infant. We are part of the Klipple Feil Syndrom, Sprengal’s Deformity and Autism community. Our journey has been difficult as it relates to finding the right provider who is knowledge and aware of KFS and SD. We joined a community group on Facebook who also have SD and since then we have been connected and learning from each other. There is much more work needed and research on SD and KFS. I am confident that our efforts to support each other we will make it possible to increase the infant genetic laws requirement for further support and research on treatment plans for KFS and SD.