Marjorie and her grandson, Graham Guest post by Marjorie Frick My name is Gee or Grammy depending on which grandchild you ask. I have been blessed to raise two daughters and have five grandchildren, four boys and a girl, all under the age of six. Our oldest grandchild, Graham, was born with a rare genetic disorder called Cri du Chat or 5p- . It is a deletion on the p arm of the fifth chromosome. During the first few months of Graham’s life, we began to pick up on small clues that there might be something amiss. My daughter fought to be referred to specialists and to get some therapies started. Graham was missing some milestones. Two of the biggest issues were feeding difficulties and sleep. After receiving genetic counseling, we finally got a diagnosis at about seven months old. This was one of the worst days of my life. It helped me see that one of my most important roles in being a grandparent to Graham was to be a parent to my daughte...
These stories describe our journey with Ben, our oldest son. Ben is a sweet and energetic redhead, born with Rett Syndrome, a rare genetic mutation. My husband, Ryan, and I try to keep up with Ben and his two younger brothers. I intend to shed insight into raising a child with disabilities and pass on the wisdom we’ve earned over the past two decades.