very small set of genes surrounding the elastin gene on chromosome 7 we have you know 30,000 genes in the brain we're talking about 20 or 25 genes in one little place on one particular chromosome and it turns out that when that is missing when that lops off in the very very earliest stages it gives rise wherever that occurs in the world to an individual with a very unusual profile I want to know your definition of will what William syndrome is okay William syndrome is a birthday fact that was born with most people with William syndrome love interaction they love engagement they love to catch your eye and get a smile and I almost feel like that that's candy for them it's like oh good I caught another smile or like someone fishing I caught one it felt so good a look if ever get chance to actually go on a r recording studio with a big Bas fiddle believe me I'll call you so I can record with you man I work at crack Baro I'm a greeter o I bet you're good at that I am I always take people to their tables and I make everybody happy I heard nice compliments the bosses are very happy and I make everybody happy I'm a happy man for the rest of my life Williams people are very musical they love music they love Arts they love dancing so that's a very cool thing about William syndrome I think there is something special about William syndrome and music in a couple of ways I mean so many people with William Syndrome have intense emotional responses to music intensely happy so I I just think a lot of people don't even them feel music um more emotionally tell me about your love for music oh music to me is like the soundtrack of the world what do you say about the challenges of how would you characterize those well there are many you know different challenges when you get to see someone H who has William syndrome you know it's like a whole different world now you do it benon stay on the road oh we went off the road a little bit let's try it one more time we're going to take it students with William Syndrome have a a difficulty Focus focusing they are known in general to have poor focusing ability it's compounded by an inability to filter out other students in the room who may be working on a different project and because of their hypers sensitive hearing they can often even hear things going on in the hallway or in the classroom next door and those all become distractions when you test a child with William syndrome you might get an overall IQ that's in the high50 or low 60s but verbal abilities and non-verbal reasoning abilities potentially in the 80s so a huge discrepancy and it means the overall IQ is not a valid indicator of the child's abilities it's it's hard because you are so beautiful but you have so many health problems that you can't take care of or it's hard to handle there's a considerable range of medical problems in individuals with William syndrome some folks have relatively few medical problems whereas others have the potential for significant involvement in many organ systems uh the most prominent area of medical problems that affect people's lives are the cardiovascular or is the cardiovascular area Ben has severe stenosis problems so it's supr valvular aortic stenosis which is the classic William syndrome marker um which is a very distinct narrowing just above the valve for Benjamin he has you know basically multiple narrowings throughout his vascular system the first surgery was at 6 weeks the total blockages have happened slowly you know over over a long period of time and his body has just made made adjustments along the way we had flow studies done and they basically just just shook their head and said okay well it works you know if he has a problem call us if not don't you know but he's kind of a a mystery man you know in that regard you like pretty girls let's see about that question sure who doesn't that's all I say about that Johnny dub he's cute oh I have crush on him to I can't help it I like um I like P and we were just talking to each other and kind of started knowing more about each other and we just kind of kind of bonded bonded very easily I think we might like to adopt children I think it's a blessing for us to be able to eventually provide for a child who would otherwise not have a loving caring family when you found out she had Williams in how what was that day when was that uh we found out in September of 09 when she was about 9 months old and um it's very heartbreaking at first but it's kind of like you just have to take it one day at a time and of course you can see she's a beautiful baby and we love her with every so no one ever planned to be the parent of a child with a disability and so then the question is you have this kid and you love this kid what do you do and I think you know in the work that I do the question isn't how do you fix it as much as how do you live with a child with a disability in a way that's good good for you and good for the child and good for your family and so much of that isn't you know it isn't like some big idealistic thing it's about the moment to moment interactions that you have with your child count the blessings first and then we'll figure out how to do something with the challenges but there are endless blessings to count and when you when you see a child that has William syndrome that's so full of life and so happy that you don't think about that's a child with a disability you think wow what a cool kid kid you know what a really cool kid [Music]