Moderators Gregory Matthews Posted September 16, 2015 Moderators Posted September 16, 2015 She greeted me with a bright smile and a wave of her hand. Cheerful, as always. She is about the same age as my granddaughter-- 10 - 11 years. I greeted her and asked what she was doing. She smiled back at me. But she did not respond verbally, as I expected. About once a month, or less, I will get a one word response and once I had a three word response. When she dos respond verbally, I immediately rush to tell her mother so that we can all celebrate. You see, she has "angelman syndrome." She is always happy. But, she does not communicate by normal means. Let us all appreciate what gifts we have. phkrause, Naomi, Jeannieb43 and 2 others 5 Quote Gregory
Outta Here Posted September 17, 2015 Posted September 17, 2015 Thanks for sharing this. A young man I know has a life like this. Never heard of the name for it though. He may have been misdiagnosed 30 years ago. Not sure if I should share this with his mother. It might break her heart. Quote
Moderators Gregory Matthews Posted September 17, 2015 Author Moderators Posted September 17, 2015 It is a genetic condition. It has many aspects. Many of those aspects can be treated. If he is 30, and has never been diagnosed and treated, he may not have that condition. People with it can live for many years. Quote Gregory
Outta Here Posted September 17, 2015 Posted September 17, 2015 He was "diagnosed" with cerebral palsy and brain damage at birth. But, honestly, having watched the hour+ video on the Angelman site, I think he really does have this syndrome. My reasoning behind not sharing it with his mother (and father, and adopted sister) is that it might not make any difference at all. They've been coping well with his needs for 30+ years and helping him to live a happy, God-filled life. They have a support network that involves other families dealing with cerebral palsy, and are a very happy family. I wonder if I shared it with her, if it would make her feel bad about it being a genetic condition. I don't think it would make any difference in his care if they *knew*. Quote
Liz Posted September 17, 2015 Posted September 17, 2015 That's a tough call Aubrey. On the one hand I've been on the side of the fence where we dealt with misdiagnosis and struggling to find the right one. I've also been on the side where we had a diagnosis and well meaning people tried telling me that their person had the exact same condition as my person and when I looked further, no they were actually nothing alike. Like I said, tough call. Outta Here 1 Quote For what will a man be profited, if he gains the whole world, and forfeits his soul? Mat. 16:26Please, support the JDRF and help find a cure for Type 1 Diabetes. Please, support the March of Dimes.
Moderators Gregory Matthews Posted September 18, 2015 Author Moderators Posted September 18, 2015 Agree. With a history of 30 years, Why not let it be? rudywoofs (Pam) and Outta Here 2 Quote Gregory
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