in the chair and from the sofa and that didn't hurt at all but then i felt the arm chair and i broke my leg. i cried for a while. and then at those sleep. but why why why why did it have to be us. to cheat. the system perfect or is one of the most common congenital bone disorders affecting children if we're talking about those that are present from birth to believe i suppose the sufferers have brittle bones and are at risk of multiple fractures but there mineral metabolism is in good order the ailment is due to

faulty college information. as the main protein in connective tissue college and is the basis of the human skeleton more. to portman by least even some adults don't become aware of the fact that they are affected until they give birth to a child that suffers from a more severe form of the disease in its worst form it changes the shape of the child's chest to build to make their arms and legs shorter and in this state even something as light and insignificant as a blanket can cause fractures. there's a swelling beneath the eye here did you hit something you always have brother can hit her mate with fooling around well well here we have

a person that we can already send to the anesthesiologist. now we're going to have an orthopedic surgery most likely it's going to be done on the left but strictly speaking both should be operated on but then will begin with the left one simply because it's so deformed that it prevents her from resting on both feet. lisa is determined to walk she can already stand on her feet she's trying her best but she can't walk because of these deformities we hope that she's going to learn little by little to begin she's going to have to start using a walker but we think that everything will work out in the end we'll be keeping our fingers crossed for her. a good morning i just tell you doing. but still be patient he elizabeth elisa oestrogen this is simple fact she

wouldn't wear planning surgery for today the name is to fix the deformities with flexible titanium pens to remedy the anger that if a mason and restore the limbs to a normal links conditions. ok just how old are you seven seven why would a big girl. i

didn't think i was an outsider when you reached my older twin brother totally healthy yet. my younger brother was ok too. in the election my father suffered from brittle bone disease but he could walk using crutches. my mother left us because she felt the problem was too much for. that my father had to take on her role in the house to. which you could use i made some progress after being taught to walk by one time the wheelchair turned over due to a mishap as a result of both my thighs fractured at the same time that when the doctor arrived he said just don't touch it don't touch it could you not how much childhood came to an abrupt end. that. will of god is omnipotent.

in the initial search i've found my soul mates on the show the woman who shares my interests and principles was originally god willing we will go through life together richard he stands with the thought if we have to enjoy our trials and tribulations well so be as good of us but then you don't import that given. us our first child was born on the first death february two thousand and three. when i was fifteen weeks pregnant my child was diagnosed with a do. you. know that unfortunately there was no internet at the time so i was not aware of how serious the condition actually is. that just says to. in the challenge of our sin he said to me you had been warned about everything it was stupid decision to i think you want to terminate the pregnancy. my second

pregnancy was out of the blue none of us could figure out when it could have happened. just staring at each other and shrugging her shoulders that's how teenagers behave in similar situations. is our second child. we had been under a great deal of pressure not to have a second child especially considering that my wife. would be running the risk of dying during childbirth. the argument was simple it was this. should she leave this world there'd be no telling what might happen to the first child but thank goodness that never came to us. was the disease to me by any chance to carry on with a cure like playing with a kitten i didn't pick up the disease did i. didn't.

know you were a didn't either but i did and i passed it on to maria and i said that's how it is. in the overwhelming majority of cases the failure of just one gene is enough for all stewed genesis imperfecta to be inherited. the risk of those impacted passing the disorder on to their children. that's. where it had french as when she was still in the womb the first months was the most difficult period for me she spent it all in an intensive care. and fractures. both arms. have fractured twice. oh happened when they were messing around at the time i wasn't being attentive enough i didn't stop them in there playing around. was that when i began

tracing the cat she lost her balance fell over and broke her. that incident to lay treatment they even said that further treatment might be pointless but if none was provided immediately then she'd be back to square one. if this kept happening over and over again then we would all of found it very difficult to deal with. one is a very painful. one doesn't hurt. you. here. that's where it's been. heard yesterday to remember. it's best to forget about it. i came with me to the lift. and that was it then they took me away.

and after that i didn't feel anything. but i slept i woke up and then that was it i didn't feel anything it was like magic i was worried about some technical aspects rather than the operation itself you think would have happened so successful but of course it's hard to look at to try to be honest but it took a political. i didn't want a few moments on the forms registering her as disabled until she was three years old. i felt unworthy of society because my child was disabled i didn't want to me that she was an invalid but whenever i rolled the promo with or lying flat on her belly everybody knew there had to be another fracture.

oh are you. ok here i've got a present for you it's a russian doll this time too but it is of a different kind it's made of crystal. thank you thank you. it's quite heavy yeah i have a year then my cast. i wish. as a rule i come here to meet the parents of other children suffering from austin genesis imperfecta first and last. god when our daughter was born we had no idea what would become of her doctors predicted a very poor outlook but they said the child was unlikely to be able to walk and faced a very bleak future. dr natalia below has spent years treating children afflicted with the disease and that she was the one who came up with the idea of sitting up

in this o.c.a. sion of parents with such children rob just going as a by the time i treat this is in clinical psychology realized that some simple methods could make life much easier for those parents. i did to need to find my new that sharing my knowledge with others wouldn't be much of a burden to me but just wasn't so i volunteered to have their so see. two months of the operation we're going to remove the costs today. i want to i can see only part of this bone this is all they've removed it. all together. it was almost center right angle. and had to be fixed somehow you. understand from my contact with children and their families but most parents need

support and encouragement. because i noticed children are unlikely to be teased if they sense that the parents are also in a comfortable that i didn't i mean psychologically. our bush bush bush. world more or. less a push against. her but don't overdo it. would be gentle. yeah . kill you through with the socks. can you reach out to me. while i go right to the same with the other hand do you need to rest against it closer to those now it's like a yoga exercise. when the child was born i couldn't understand it was wrong with her she was like john

and her burns were soft and flexible. we didn't tamper with helen's they just fixed and each time they got thread chert she was in plaster for six weeks at a time she was simply fall down and break. muscles don't support her spine throw. by half hour walk is not to make a spine show through the process of compression. i do exercises with her. so i think she feels more comfortable when i am by her side. what's most difficult is making her realized that she must help herself by getting stronger through exercise yes the bush league race. will

not board with the michael moore most of the children tain in the courtyard oh boy it's good they keep it to arm's length then i can't take part in simple i'd games because there aren't enough goes around she doesn't need contact with other people i see that she wants to to communicate. the world that's going to work. she knows she has admirers and that's a source of inspiration. for. the rest of the oh. listen i want to invite you to attend the event you've been looking forward to the place is called the museum of intertainment science all of us will be there in saturday. by the way coming to.

grades haven't seen each other for a long time you miss him. very much. mission. critical patients free. for charge free. arrangement free. free. free. download free broadcast quality video for your media project a free media oh god r t dot com. government no longer represents the breed. of the people who are going to take such a. way to.

compete in the traditional in the uk. the way our economic system. is not. i. i. i. i. i i.

i. i. yeah and i. like who. my parents were atheists

it's the same they were among those people who was built the soviet union realty and in those days it wasn't all that easy to express your faith the adult here in the twentieth century what the idea of it when i started to live on my own then i was baptized with. that's when i was twenty six years old. it was abundantly clear to me that if i had a guardian angel who was looking over me and protecting i had a free will because i'm hurting his feelings would really not be a nice thing to do and wish to get away i felt that i would offend him if i didn't join the orthodox church with the. fusion if the happiest i. look at that across here in this holy place is that the what the law says see the entire family of royal must as was murdered in nineteen eighteen it is there and their holy remains with. those of alexey the heir apparent and his sister as.

that's why this is a holy place any more they pray for us to understand. i don't have the worst husband and the wild mind children on two problematic either. things on said dreadfuls that i have to complain and we pause a time. i want is

a tough place to live and i'd like the children to be more self-reliant without being dependent on other people. to feel. good. yes but the front of the thing is that because see life as something beyond your reach or something you can't cope with but the but if you're a human being in the proper sense of the word almost anything is within your powers but. i may have become somewhat braver but chose to rely on god's will in me i had a dream that i wanted to visit st petersburg the constable that i nurtured it for twenty five years i yearned to go that route to the gulf and finally my dream came true that if you abandon yourself to god's will in the belief that what ever happens will happen it's easier for you to achieve your goals. that

gives you the courage to face unknown challenges. mama told me either we're going to go to school or study at home i said i'm going to go to school the clay all children. and then i was staying at home and studying on my own would be boring i don't have any bad grades only good and great going into the school i don't like reading or writing writing takes too much time and sit i am not particularly fond of reading mathematics is more interesting for you we do exercises and draw our patterns in our math lessons new

orleans. get a yeah i'm going to be an artist over the years because drawing that's what i like most of all. this. the children understand that these is not like them they know. they better not pass to her and leave her alone to avoid unnecessary problems. but she does try to join in. sometimes she even chases other children as she drives her wheelchair around the room she chimes then when the boys or girls are discussing something that has friends and the surge and fifth forms as well as her own. i discovered she copes pretty well without me sometimes she asks me to stack pick up books because she finds it difficult and doesn't deserve to go there i fear for his safety because she might fall from the chair she leans over. the fine news that

somebody was taking good care of her school i'd get a job bad my injury. has turned my life around before she was born i wasn't aware of what the world is like for disabled people it really was beyond my perception i sensed that their problems provided me with a host of opportunities for reassessing my values and now i communicate with an entirely different kind of people interesting people my life has taken quite a different turn and i like it very much. my first wish was to bring them together so that parents could see one another and children could realize they weren't the only ones suffering from that disorder where they need to know that other children have been diagnosed with the same disease but the elite in normal

life all the same but here they can do what they like it's very important for parents to know how they'd children feel they should allow them to move as much as they can. you run the risk by doing so but it's a risk worth taking because you know why you are taking it. newsgroup hours they are friendly to one another more than that girls know communicate with voice for example i know that has a bit of a crush on nikita searing heat. while it's so beautiful. thanks you're welcome. when the kids and i first met and planted to talk about always glad to read on that there was somebody else like me who the delight explained on line games. if i find

a new game he placed with me was on the proceeds to. circle the sends me messages as soon as i am on the internet. love your children since with children in wheelchairs i would like to meet more people so that i could visit them for birthdays and other parties. i'll tell you gave birth to twins this would come from the kitchen carrying the baby brought to life just she would use it to feed them with my own. their good day for the good of the show as any three years old and already she was trying to help

me this year i knew that. known as the. hill i wish you happiness and health. i hope you'll be caught and well behaved. i love you i love you oh. thank. god my husband where god the other children will take care of her no doubt about. the love of insecure a to have such a family it is said to blessing. some kids don't move much but there's no stopping her she was six so three and five

minutes. in the book says all we're doing this concerns both the state of our health and this day develop. i think we can convention eight ourselves and told her that she can have a good life. and she knows that does a good deal of interesting useful and into taining things in this world she was never faced a situation when nobody needs her. honestly if i had a child diagnosed with austere genesis perfect i wouldn't have a problem with. i'd be glad if that happened in my life it's because i know these children so well and they're full of optimism and i know that they're going to go very far in life that i did what any parent has to be proud of such a child i just wish that there were no tears and there was no pay.

there are twelve cities in the united states in which half of the people with hiv aids lives within a year. this is a problem that. is like the big elephant in the room and nobody wanted to talk there were really good public health campaigns people were really focused on this

problem you certainly should be able to. bring. technology innovation.