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angelman syndrome

Posted by on Jul. 21, 2012 at 9:26 AM
  • 18 Replies
I have recently got in touch with my uncle whim i haven't seen or heard from since i was 5 or 6 years old. Long story short my dad didn't keep in touch with his side of the family. Well i learned that two of my cousins who are 12 now have angelman syndrome. My uncle was told that they would never walk and be on feeding tubes all there lives. Dr.s told him to pu them in a home. My uncle is a great father. He said no i will raise them and they will succeed. My cousins learned how to walk and can say a few words. My uncle had become an advocate for his boys and has done lots of public speaking. He pushed for a special needs playground to be built in his sons school and one in the city. I can not believe i was so out of touch with such a great man. I am just learning about this disorder and am hoping to learn all i can. I hear its a neurological disdorder often people with this disorder get mistaken for autism or cp. It causes lots of delays in physical and mental. It causes seizures. Well atleadt my cousin have seizures. I am hoping to learn more. Does anyone here have kids with this disorder and can tell me more?
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by on Jul. 21, 2012 at 9:26 AM
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Replies (1-10):
mandee1503
by Amanda on Jul. 21, 2012 at 9:31 AM
1 mom liked this
Here is a bump. We don't, but someone else might.
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lifeisajoy
by on Jul. 21, 2012 at 10:51 AM
1 mom liked this

I don't have it but there is an Angelman Syndrome Foundation (NORD) --that has lots of info on it---

myfirstborn04
by on Jul. 21, 2012 at 10:56 AM
1 mom liked this
Thanks!!!


Quoting lifeisajoy:

I don't have it but there is an Angelman Syndrome Foundation (NORD) --that has lots of info on it---


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letstalk747
by Joy on Jul. 21, 2012 at 12:43 PM
1 mom liked this

never heard of it , he is a good man for sure

darbyakeep45
by Darby on Jul. 21, 2012 at 5:26 PM
1 mom liked this

I have a dear friend with a little boy with Angelman Syndrome...his name is Dylan and he's 4 years old and in my son's class at school:)

kimber2465
by Bronze Member on Jul. 22, 2012 at 11:43 AM
1 mom liked this

my daughter has some of it

lasombrs
by Member on Jul. 22, 2012 at 5:59 PM
1 mom liked this

bump I have not heard of it before

sahm2shaina
by Member on Jul. 23, 2012 at 1:47 PM
My son is being tested for angelmans syndrome. It's a chromosomal genetic disorder that affects the 15th chromosome. It causes sesuires, expressive receptive speech delays (kids are expected to have 30 or less words thee whole life), balance and coordination difficulties, severe developmetal delays across the boards, autistic like characteristics, and mental retardation. Individuals with angelmans are also known to be extremely happy and easily excitable, they have normal life spans unless they have neurological side affects from sezuires.
myfirstborn04
by on Jul. 23, 2012 at 3:20 PM
Thank you, how old is your son?


Quoting sahm2shaina:

My son is being tested for angelmans syndrome. It's a chromosomal genetic disorder that affects the 15th chromosome. It causes sesuires, expressive receptive speech delays (kids are expected to have 30 or less words thee whole life), balance and coordination difficulties, severe developmetal delays across the boards, autistic like characteristics, and mental retardation. Individuals with angelmans are also known to be extremely happy and easily excitable, they have normal life spans unless they have neurological side affects from sezuires.

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gma12.1
by on Jul. 23, 2012 at 4:09 PM

 My 8 yr old GD was tested for Prader-Wili & Angelman's due her obesity and obsession with food, then a broad spectrum genetic testing to see if there was anything that was the cause of her problems. Prader-Wili, & Angelman's came back negative, but she has abnormalities on 2 different chromo's. I have another GD that has Prader-Wili, my DIL & DS are doing a wonderful job and have researched it as best they can, my GD was expected to have a lot of problems because of her shakey start in life Dr's weren't sure would survive. She is almost totally caught up with her peers in so many areas that the GD I am raising isn't. She will more than likely always be in a SpEd program due to the need for her to be monitored for her eating, we are all hoping that the eating issue won't be as severe as most who suffer from this syndrome. From my research into it, the research also put Angelman's into there because both genetic problems are on the 15th chromo. From the research it said that there are a few charaterists(spelled wrong) that both share but they are very different syndromes. The research said that overweight/obesity was a problem as well as short stature. Those are the 2 that I remember because they went with Prader-Wili too. I also found out that both of these syndromes are not as rare as we think, they are just considered "Bastard" or "Orphan" conditions so there isn't much research into them.

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