Tuesday, April 15, 2008
Cornelia de-Lange Syndrome
My cousin Vanessa was born with Cornelia de Lange Syndrome. She's older than me, but looks like she's just a little child. Here is an article on the syndrome which describes what it is, what are the symptoms, and how it is caused. She wears a diaper as she can't go to the bathroom on her own. She's fed through a tube into her stomach because she can't feed herself. Her arms and legs are really skinny and small. Her eyelids are about 75% down over her eyes as if she squints all the time. And she grunts to communicate. It's pretty sad every time I see her. I don't know what the lifespan is for children like that, but her parents will probably be taking care of her into their old age, and then her older brothers will have to carry on the responsibility.
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4 comments:
I find it wierd that it occurs in children with no family history of the disease. It's sad when things like this happen, and it kills me to know that there's not a lot out there that can make them "normal". It amazes me that some people can be born with no defects and be abandoned on the street, and then there are the unfortunate children who are loved by their families and taken care of until the end. I guess more people need to learn to be greatful for what they have.
hey - i read this and felt the need to comment it. my heart goes out to you jake...and your cousin, i have a cousin, Evan who has d.s. and autism, he's 22 but very hard to manage- he still cant do alot of things on his own, even though my aunt and uncle are usually exhausted Evan's still ausome to be around, and i also agree with Amanda's comment, people cant take these things for granted.
I am really not sure what the lifespan of one having that syndrome might be, but someone told that it doesn't reach a normal life span. There a lot of persons having some member of their families with syndromes. And it is really sad when you see them
i just was searching through some blogs and came across yours... thank you for raising awareness about cdls jake! i would like to say that kids with cdls can make it to a ripe old age considering that their health is well managed. my son was born with cdls last year and i have done TONS of research on it. my suggestion to you is to ask your aunt and uncle about your cousin. i'm sure they would be very happy to tell you about her. and please, don't feel sad for a family with a child that has a syndrome. it is tough, but the love the children bring us is wonderful and very special. ask us about our children. talk to our children. but please don't pity...
you are all right in saying that people take a healthy life for granted. again, thank you for sharing about your cousin. take care... for all of jake's readers, please check out my blog to learn more about cdls, or visit the foundation!
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