Today marks the first day of the second year of International Cri du Chat Awareness week!!
Cri du Chat Syndrome also known as 5p- is a rare genetic disorder affecting 1 in every 37K-50K live births. The syndrome is known to result from a deletion in the short arm of chromosome 5 and represents one of the most common deletion syndromes in humans. This condition is found in people of all ethnic backgrounds and is slightly more common in females. They result from a chromosomal deletion that occurs during the formation of reproductive cells (eggs or sperm) or in early fetal development.
Cri du chat syndrome is a genetic disorder; it is not an illness or a disease therefore there is no cure.
A child born with this disorder has specific physiological problems which can result in their development being delayed both physically and intellectually. They may also have health problems because parts of their physiology have not developed correctly. The size of the deletion and the severity varies among affected individuals.
Individuals with Cri du Chat Syndrome have to overcome a lot of challenges but with the right intervention and support can live happy healthy lives.
When my daughter Sophie was born she was very sick, no one picked up on the obvious signs and symptoms of the disorder because it is so rare. She was diagnosed at two weeks old through process of elimination as they tried to figure out why she was becoming sicker with each passing day. The diagnosis gave a dark outlook on her future and according to the doctors they doubted she would have one.
The syndrome is so rare that many of us parents have to educate the medical professionals we take our children too. How can our children receive the proper care if the medical professionals treating them are not educated correctly on their syndrome or the symptoms and complications that arise from it. Our goal is to educate!
It is our goal, the 5p- Society who is made up of loved ones of individuals with Cri du Chat Syndrome to join together around the world to raise awareness. To educate medical professionals, family, friends and the general public. It only takes one person to make a difference. Wouldn’t you love to be a part of that? Read about it, share the information and be accepting. Learn more about Cri du Chat Syndrome and join us to support International Cri du Chat Awareness Week. Let’s give our loved ones a VOICE!
This year our theme is I can! It’s time to show the world that our loved ones CAN be happy and live a healthy and productive life. Education is key. Knowledge is power, with power we can make a difference. What are you waiting for? Help us make a difference.
So please take a moment to talk about it, share the information in an email or tweet. Help us let the world know we exist!
My Dance in the Rain 