My ex's niece has Williams syndrome, I have never heard of any cardiac problems meantioned, she is high functioning but you can certainly tell she has a mental disability, as well as those elfin features. She has a lovely, friendly personality and a great memeory she is around 35 now and for a while she moved into a shared house situation but is very much a home body and likes routine and does'nt do well with change so she did'nt last long, but certainly could have handled any tasks required as far as home duties went.
Best of luck, I am sure it will be a relief to know for sure.
Thanks Black Duckies. I am hoping so much that she is clear. I thought for a while that at least knowing would be helpful. It's just such a difficult road for her if she has it... I need to get my head right about it and it's a bit scattered really.
I personally believe that we are all just perfect and for me she is perfect. However, as a mother I want for her to have a full life. I need to adjust my definition of what a full life is...
My cousin's son has Williams. The initially thought it was autism but it turns out not. They are lucky enough to live in Denmark so have marvellous facilities and intervention (he was identified by age 2 and was having hours a day of one-on-one therapy from an early age). He's now 14 or so. I haven't seen them in years but when they last visited he seemed like a slightly odd 12 year old boy, but nothing more or less. He was affectionate, smart and geeky - if I didn't know there was "something wrong" I wouldn't have picked anyhing as being overly unusual with him. He's the oldest of 5 and my cousin has managed to do a degree in psychology since he was born so his condition hasn't stopped his family having a normal life. I do know he gets a bit obsessive - when I last saw him he was really into butterflies
Whatever the outcome of the testing, I can honestly say that I know that Immy will have the best life and the best of opportunities with you as her Mum. She's very lucky.
When I was working in the States, I worked with a group of young adults with Williams Syndrome, and they were amazing. As well as being amongst the most lovely people I have ever met, the group I worked with wrote and performed a musical. If I can dig it up, I could post it out for you to have a lend. (not sure where I have put it) Yes most did have elf like features, and a an intellectual disability, but their musical abilities allowed them to function in a "normal" society and many showcased their talents to the generaly public.
What ever the outcome, I hope for the very best for Immy
I hope so much Immy is in the clear.... I can only imgine how stressful the waiting and the constant adjutsments to your famly life must be. We are currently being closely looked at for a syndrome ( I am still pregnant) so our waiting game will be a long one also.. I guess only time will tell, I will be keeping in mind the ear tag when she is born and I am sure it will be one of the first things I look for. (thanks for that little piece of info)
Registered User
Reply With Quote
Bookmarks