There’s a chance there is another girl with Angelman Syndrome living in my county. A teacher at my boys’ toddler summer camp asked me if I had seen the article. I hadn’t! I have to assume it wasn’t in our local paper, but maybe the Bedford paper or Toledo Blade.
I’m excited. I’m always interested in the possibility of meeting another family. I already know of a few, but for depressingly random reasons, I have no real relationship with any of them.
P- Same age as Maddie (10). His mom refuses to tell me he has Angelman Syndrome, but by off chance meetings with her neighbors, and a gossipy therapist, I know he does.
G- Same age as Cassidy (8). I think it was too hard for the mom to compare him to Maddie.
L- Same age as Andrew (4). I met the mom met totally by chance in a support group meeting I was giving a presentation to. I loaned her a book and a video, scheduled two dates for her to come over, and then never heard from her again.
I would really like to know someone else nearby. I can’t imagine my life without the love and support of the Angelman Syndrome Listserv. Yes, it takes effort on my part too to participate, but what I get back is so much more. To have someone locally? That would be great.
1 Comment
July 25, 2008 at 12:07 pm
Emilie,
We too just found out there is an angel (boy) in our town. He is 8 yrs old and I intend to link up with his mother for no other reason than his and Miss Emma’s sake. They deserve to meet one another.
We have also recently met 4 other families within an hours drive for each of us and had a small gathering in June. The young girl was 10, one boy was 8, and the hosts son was 5 and UBE3A.
When the 4 angels came face to face it was as if they all knew that they were connected. You could literally see it in their facial expressions. Off to the sandbox all 4 went and played amongst themselves like no one else in the world was there.
We meet again in August, just the parents. Every 3 months they plan a get together, parents then next time the children. It is a lovely group and we are so thankful to have connected. My son really needed to see that he is not alone in raising Miss Emma and that there are other parents walking the same path he and Miss Emma walk down daily. xoxoxo