No the child in this little story does not have Diabetes but I thought it might be of interest to you. It is a story of profound family love and commitment in the face of possible devastating circumstances. You see Beth, Julia's mother, is a personal friend of mine and her wisdome, devotion and quiet solitude has been a great strength and comfort to me through many difficult time. It is my srong conviction that their story will help you too.
Wednesday, January 26, 2005
So...what is Cri du Chat anyway?
In this blog we want to celebrate our precious Julia...our littlest angel who was born with Cri Du Chat Syndrome on December 10, 2002. My name is Beth and I am the mommy of this great treasure and her 4 sisters and 2 brothers. I hope that by chronicling Julia's Journey here we can provide a positive picture of children with disabilities in general, and those with Cri du Chat in particular.
Cri du Chat is the result of a terminal deletion on the short arm of chromosome 5. This syndrome is characterized by significant cognitive deficit, moderate to severe developmental delay, identifying physical characteristics and a myriad of health issues.
Julia is our 7th child and was diagnosed with CDC at 3 weeks of age. You can imagine how we felt when an internet search revealed that children with CDC live an average of 4 years, never learn to walk or develop speech, and are plagued by many behavioral difficulties. Although new studies are emerging that refute much of the earlier research, the negative information that we found is still the first info that most new parents unearth in their search for answers about CDC.
We have found in the 2 years since Julia's diagnoses that although there are many developmental challenges, there is also much beauty and many successes in the lives of those who have CDC. As one grandmother said of her granddaughter who has CDC..."Although we long for her to have a normal life, we wouldn't trade her for any "normal" child in the world."
We are very interested in meeting other people who may be facing the same sorts of challenges that we are. For more information about CDC please visit Julia's website at www.celebratingjulia.com.
