These are the stories of us. These are the anecdotes of our days. This is the good bad and ugly (mostly good) of our not so unique, large (but not as large as some) family, living life to the fullest. Some of us might not have the average number of years generally allotted but we will fill each of those years with the celebration of family, friends and life
Sunday, February 5, 2012
Cri du Chat syndrome or otherwise known as 5P minus is the deletion of a portion of the fifth chromosome. Kids affected it with it range in development from profoundly disabled to a more mild presentation. My daughter falls into the severely affected. She has a developmental level of approximately twelve to eighteen months with some scatters a bit higher. Physically she has some problems as well. She would be classified as quadriplegic but she is able to walk though unsteady and not for great distances. Phoenix is total care in all areas of her life. That is how Phoenix illustrates Cri du Chat. The syndrome however is not WHO she is. Through these pictures as poor a quality as they are I wanted to introduce Phoenix is a daughter, sister, granddaughter, student, participant and spectator. She is active in all facets of her life and makes her presence known. She is kind, mischievous, knows a good joke and can be a comedian herself. She is an observer where by nothing gets by her. She has a determined spirit that has allowed her not only to survive precarious beginnings but helped her to develop
into the outstanding person that she is. I love her beyond measure!