I am so sorry that your neighbor is having that bad luck to give birth to a child with Williams’s syndrome. I knew one little girl who was suffering from this condition and I remember that she was extremely polite but very afraid of the noises. Later her parents have told me that the children and adults with this syndrome have very sensitive hearing.
One of the main problems with William’s syndrome is heart conditions which sometimes require different surgical procedures. If all this ends up well than your friends child has possibility to lead full, active and almost normal life. It is great that you are so interested in this because your neighbor will need everybody’s help including yours.
I don't think you should take the phrase 'bad luck' as a negative. My friend has a wonderful daughter that has WS - and as a mother, she feel's that it is 'bad luck' too - she hates that her daughter suffers in some areas due to the conditions that come with WS. I really wish our society would not be so quick to find fault when a person offers genuine, kind consideration for those who are born with a genetic abnormality. I have another friend whose daughter has microcephaly - and they feel it is 'unfortunate' as well - for don't all parents usually say 'i just want my baby to be healthy, with no complications' ? When you care for someone, and see them hurting over the condition of which their child is born - your heart hurts for them, and you wished they weren't facing the difficulties - and they are difficulties - that come with a child born with a condition - whatever that condition may be. A parent of a WS child knows about medical bills, sleepless nights, sadness when they want more for their child, etc. So - for the person who posted that the statement of 'bad luck' is ignorant - what would you call it - 'you had it coming' - 'you're a c**p parent' - 'you are such a special person to me, and I'm sorry you have this added to what should be a time of only celebrations - not contemplation of what to do now - what's wrong with my child - how do I help my baby'. It is you who are ignorant - maybe you are too young to understand that when a friend cares - when a person cares, and they have wisdom - they know that a parent with WS is facing sadness, and worry, and hurt, and confusion - AND - that we often refer to those not happy things as 'bad luck' sometimes - but we are referring to the only that - we are not referring to the baby with WS - grow up. How insensitive of you. Have we reached a place in our society that we can bash a kind person for the slightest politically incorrect terminology - that MOST of society would not interpret as negative. I love my friend's daughter that has WS - but I feel bad for her mother, as she is facing some very serious problems currently with her daughter's health - and when I say to her 'I'm sorry' - she doesn't freak out and think I'm being ignorant - she knows I care that she is having some bad luck. I hope you see this post - and change your way of thinking - I hope you never assume that a person is ignorant because they don't use the words you think they should use. Get over yourself, and assume that a person is being kind.
I was also looking for answers as the the life expectancy of someone with Williams Syndrome when I came across this site. I can let you all know that my brother-in-law was born with this syndrome and is now 62 years of age. He resides in a Nursing Home and we do know that he is slowing down a great deal. He also has Bowen's disease as well and has had numerous operations in his life time. We all love him dearly and he has taught me a lot over the years.
Thank you for this reply Jude this gives me great hope...
Your quite the specialist arent you.
It all depends on the person. I knew a teacher that I had in High School who had a daughter with william Syndrome..I didnt know her personally but Ive seen her around when I went to footbal games..But she sadly passed away June of last year at age 5 years old..So like I said it depends on the person
Let's town it down on the "bad luck" comments. The person attempted to ask in the most polite way he or she could (not sure what sex Heida is). I'm not saying it was in the most professional manner, but he or she wanted to expand his or her knowledge on a relevant subject. For f**k sake people, is it necessary to get that ass hurt about something so small? We all came here for a reason, which is related to Williams Syndrome. Instead of placing yourself above somebody by being "Politically Correct" why not be a human being and ignore the small stuff, especially on a helpful site. There are a ton of ways to word it, a blessing, our child, he/she is the love of our life,nephew/niece, cousin, the love of our neighbors live, and yes- even bad luck. Regardless of how pc or sensitive the poster was, it's obvious he or she actually wanted to know legitimate facts without possibly offending his or her neighbor. If we still get hung up on a few words in a paragraph, how will we ever move forward with true education on the facts?
Good Lord you are touchy. I think all raising a disabled child know that nobody raising
"normal" kids can possibly understand.
You had a teachable moment where you could have expressed kindness, explained that you did not consider any disabled "bad luck" (there is a kind of genetic roulette about any disability since birth).
Try raising a child who was perfect until 18 months old, bit by a mosquito n in Walter Reed hospital 2 years after spending nearly a year at a hospital overseas: encephalitis.
He is deaf, has CP n severely mentally
retarded in half his brain (only half developed).
but he can't tell time or count $$$ - he will drive your car away n - thinking it is a joke-
refuse to tell where he left the car.
Or get on his special bike n take everything you own to Goodwill (inc all jewelry n even underclothes) n donate it all.
N at age 35 have a staph infection resulting in septis losing any ability to walk, sign or ear so today at nearly 50 he is still cared for at home, on a feeding tube (he loved eating but the antipsychotic drugs left him with dystonia) so he cannot communicate- toilet himself- just lay there.
Then imagine mom n dad refusing tp find a place for him when he just graduated Helen Keller school: 20 years later both are dead inside of a year.
Leaving us with $$$ for his care n his big sister in charge of his care.
Bad luck? I don't know but I know my God never intentionally struck down a toddler.
I lay that in Satan's lap.
Oh - Terry was never taken to church, parents had no Bibles in the house but he talked of God n Jesus all the time.
So much that when his meds got way off schedule (thrush his elderly parents n docs did not catch: his big brother, my husband,
looked in his mouth when he stopped eating-
They locked him in a psy ward for "talking to God".
Imagine that.
Dr. Lucy