5p Syndrome aka Cri du Chat.
Cri du Chat, aka 5p Syndrome is a chromosomal deletion disorder resulting in a wide spectrum of intellectual and developmental abilities. Each year in the United States, approximately 50 to 60 children are born with Cri du Chat, or 5p Syndrome. These individuals will likely need a lifetime of support. Parents who have children born with this rare disability are usually given a very grim prognosis. In many cases they are told that their child will never speak, never walk, and not be able to accomplish much of anything.
Defying Expectations.
But, as often is the case, many children with Cri du Chat go on to have remarkable breakthroughs and are able to overcome a lot of these challenges. New therapies and treatments along with improved technology has allowed many kids to exceed and succeed far better than anyone expected.
Loving You Big
Like most people, I was unaware of Cri du Chat, until I was contacted by Leah Moore, who writes the blog, Loving You Big. Her daughter Jordan, now age 7, was born with Cri du Chat, and Leah’s blog has some remarkable stories of how her family’s life goes on with a child who has such challenges, but also such amazing gifts. Leah is a high school English teacher in the New York City area, and can’t help but find the irony of her life, as she says, “in love with words”, yet now faced with a daughter who struggles so hard to speak. She also talks about coping with her emotions and that she now also has two twin sons who bring their own set of issues. It’s a story that many parents of special needs kids can relate to.
Links mentioned in the podcast:
Leah’s 3 favorite posts from her blog:
Welcome To The World, Baby Girl.
Video of Leah and her husband Zac, and their daughter Jordan.
Resources:
The Danger of a Single Story – Ted Talk by Chimamanda Ngozi Adichie.
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