I wanted to let anyone who might read this blog learn a little about this rare disorder and also about the inspiration that Jeff and Erin give me each day when I think of how they have come to find blessings in life's challenges. Below is a message about Zoe from a special line of greeting cards called Zoe's Meow designed in her honor to bring awareness to Cri du Chat. They may be purchased through Vertical Printing & Design.
Please wish Erin, Jeff, and Zoe the best as they travel back east to "The Institute" in Philadelphia for Zoe's follow-up evaluation. The following was written by Zoe's parents.
Zoelia Claire was born on February 26, 2007 after a beautiful, uneventful pregnancy. She was a full term baby but when she arrived, she was unexpectedly small (5 pounds, 2 ounces). At first, the hospital staff thought she had an infection so she was rushed to the ICU, put on antibiotics, and watched closely. After a stressful week and less than ideal circumstances, everyone at the hospital assured us things were progressing nicely and she just needed to gain weight so that she was strong enough to come home. What a relief.
Ten days after she was born, our world changed... the results from her chromosome test came back. She had a rare genetic disorder (the true cause of her petite stature) and was diagnosed with deletion of chromosome 5P, meaning she was missing the short arm on the "X" of chromosome number 5. This disorder had a syndrome associated with it called "Cri du Chat" or "Cry of the Cat" due to the high pitched cry these babies make.
We were told she would have significant disabilities and that her development in all areas would be delayed - either a little or a lot, both physically and intellectually. The doctors explained that she most likely would have significant challenges, especially in the area of verbal communication. We were told optimistically, about half the kids with Cri du Chat can communicate verbally... with at least a few words... and most can walk. As a comparison the doctors explained she would be special, like a child with Down Syndrome, though most likely not as high functioning. They advised us to not rush to the internet for more information just yet - the outlook we found there might not be as positive.
The news was a complete shock. We couldn't believe it. We took it in. We cried. And then we cried some more. There was no history of genetic disorders on either side of our family. About 80% of Cri du Chat cases, have no known cause... it's just the luck of the DNA draw. It affects only 50-60 babies born in the U.S. each year so there's no big telethon or walkathon out there to help find a cure.
But we believe the story of Zoelia Claire is yet to be written. And she, the sole author. No doctor can write her story, no therapist, no expert can chart her path or the limits of her journey. She alone will create and sing the melody of her song. Part of our job as her parents will be to keep the page blank and free from other tunes the 'experts' would compose for her. Our job will be to hold open the world of possibility for her. Our challenge will be to let go of attachments and expectations so she is free to express her spirit. She will teach us and guide us. And we hope that we are worthy.
We search everyday for answers. We look in all directions for guidance. We are committed to finding her the best care, the most innovative treatments and most of all, surrounding her with love so that she may thrive and flourish. Though the road may not be smooth, the bumps and curves force us to slow down and appreciate the scenic route. We have been astounded and amazed by so many people who have been moved by her. Just her quiet presence in this world has called so many to action in creative ways to help her. And we have been overwhelmed and moved by the outpouring of love and support. We thank you for sharing our journey and reaching out to make a difference for her... for us... for you. Please, keep it up! It takes a small village to raise a child and this is ever more true for Zoe.
So we've had a chance to ponder our situation and we've asked ourselves, "Why us?" And our answer so far has come back, "Because we are blessed."
The Buddhists believe a child like this is one of the highest forms of incarnation and it is considered an honor and a blessing to receive a highly evolved soul such as this. So we will end by offering this prayer:
"I honor the Divine place in you where the entire universe resides. I honor the place in you of love and light, of truth and peace. When you are in that space in you, and I am in that space in me, there is only One of us. Namaste."
Wishing you love and many blessings,
Erin and Jeff
1 comment:
Outstanding explanation.
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