The story of Olivia

Shiloh was born on June 18,2019. He has been diagnosed with around 40 conditions since then and is currently participating in the Undiagnosed Diseases Network in hopes of finding answers. He has a 6Q22.31 micro duplication but it’s of unknown significance. Shiloh has saggital craniosynostosis, polymicrogyria, small optic nerves, nystagmus, is missing is olfactory apparatus, has no philtrum, has severe tracheobronchomalacia, a high palate, dysphagia, dysautonomia, epilepsy, cerebral palsy, heart and lung disease, has had neuroblastoma, clubbed feet, among other issues. Shiloh is the middle of 3 children and has an older and a younger sister. He has a trach, g-tube, and j-tube. He loves his pacifier and his favorite tv show is adventure time. He has a Facebook page called Shiloh’s Journey. We’re taking this one day at a time and hope we can help others who have similar issues.