the first. she had to you didn't sleep on a cushion because she would cry when we touched her. yeah i probably fell from the chair and i from the sofa and that didn't hurt at all but then i fell off 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. but. you. need to simper factor

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 are mineral metabolism is in good order the ailment is due to faulty college information. as the main protein in connective tissue college in is the basis of the human skeleton more. skinnier. to court mumbai 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 new as have brother you can hear her mate with feeling 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 to form that it prevents her from resting on both feet. lisa is determined to walk she can already stand on her feet she is 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 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. with the patients 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 pins to remedy angular to from a sion and restore the limbs to a normal links in equations. ok just told you seven seven while want to go.

i didn't think i was an outsider when you reached the elder twin brother totally healthy yet. my younger brother is 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 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 him don't touch him could you not tell my child it came to an abrupt end with the. will of god is omnipotent. which i found my soul mate. the woman who shares my interests and principles was originally god willing we will go through life together and if it. if we have to enjoy our trials and tribulations well sobieski that he is but then you believe that given the. most our first child was born on the first step february two thousand and three. when i was fifteen weeks pregnant my child was diagnosed with the disorder you know that unfortunately there was no internet at the time so i was not aware of how

serious the condition actually is. that this is 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. was 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 our shoulders that's how teenagers behave in similar situations . is our second child. we have 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 care. like playing with kittens i didn't become the disease did i. didn't. know you were a didn't know what i did but 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. like that when i began tracing the cat she lost her balance fell over and broke. 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 does it hurt. you. here.

that's why it's. hard yesterday to remember. it's best to forget about it. 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 anything could have happened so the operation was successful but of course it's hard to look at a child off to be honest but it's a little. i didn't want to feel old 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 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 water 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 auster genesis imperfecta source and list. 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 is what she was the one who came up with the idea of sitting up in the. parents with such children are not going as a by the time i had treatment this is in clinical psychology realized that some simple methods could make life much easier for those parents. i did to meet if i knew that sharing my knowledge with others wouldn't be much of a burden to me. so i volunteered to have their so see. it. fall since 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. all

together. and. it was almost time to right angle. had to be fixed somehow you. understand for 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 on a comfortable but i didn't i mean psychologically or physically just. scared. our bush bush bush. feel like. the world on more or. less or push against. her but don't overdo it go you know you would be gentle. yeah. true with the salk. can you reach out to me.

more of all right do 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 what was wrong with her she was like jalen her burns was soft and flexible. we didn't tamper with her limbs they just fixed and each time they got thread chert she was in plaster for six weeks at a time she would simply fall down and break its. muscles don't support her spine. by half hour walk is not to make her spine show through the process of compression. my do

exercises with her. so i think she feels more comfortable when i am by her side. like a good girl 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 playing their arm's length when i can't take part in simplied 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 though. listen i want to invite you to attend the events 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 balancing the show all the time you miss him. very much. wealthier british style. markets why not. find out what's really happening to the global

economy cars a report on our. download the official application to yourself choose your language stream quality and enjoy your favorite. if you're away from your television just doesn't matter now with your mobile device you can watch ati any time anyway. live.

live. live. live live please live live .

you. know. why. because both my parents were atheists is to say they were among those people who built a savior to union realty and in those days it wasn't all that easy to express your faith here in the twentieth century what the idea of there when i started to live

on my own then i was baptized 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. am hurting his feelings would really not be a nice thing to do and most of it would leave i felt that i would offend him if i didn't join the orthodox church with them. his mission. look at hand across his. erin there's such a holy place that the what the law says to be entire family of royal mottoes was murdered in nineteen eighteen it is there and their holy remains with. those of alexy the heir apparent and his sister as. that's why this is a holy place and the 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 say dreadfuls had to have to complain and weep on the time. they 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 set the from stone the thing is that we can't see life as something beyond your rachel is something you can't cope with but if you're a human being in the proper sense of the word like human almost anything is within your powers but i just feel i may have become somewhat braver but i chose to rely on god's will in the media i had a dream that i wanted to visit some petersburg a lot of the kind of stuff like i nurtured it for twenty five. yes i yearn to go that would give those who 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.

murmur mama told me either we're going to go to school or study at home i said i'm going to go to school. all children. i don't know we're just staying at home and studying on my own would be boring i don't have any bad grades only good and great going into will be school i don't like reading or writing writing takes too much time and. i am not particularly fond of reading game or mathematics is more interesting for you we do exercises and drug patterns in our math lessons new orleans. you get a yeah i'm going to be an artist the worst thing is because drawing that's what i like most of all. this beautiful buffoon the children

understand that lease is not like that they know they'd 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 or else she chimes in when the boys or girls are discussing something and the chairs friends and the certain fifth forms as well as her own person. to speak to cope space he will about maybe some. time she asks me to stack pick up books because she finds it difficult. i fear for his safety because she might fall from the chair she leans over. if i knew that somebody was taking good care of harry's school i'd get a job bad my injury. or his going to 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. 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 is not what they need to know that other children have been diagnosed with the same disease but the elite and normal life all the same. here they can do what they like it's very important for parents to know how they 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 for. a new broom bauer's they are friendly to one another more than that girls know communicate with boys for example i know that has a bit of a crush on the kids a series. that was all it's so beautiful. thanks you're welcome. when the kids and i first met had plenty to talk about always glad to roan that there was somebody else like me likes playing online 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 to show doing things 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 kid would come from the kitchen carrying the baby bottle like just she would use it to feed them with my own. but a good bit of the good when she was only three years old and already she was trying to help me. i knew that. known as. a little i wish you happiness and health. i hope you'll be caught

and well behaved. i love you i love you. low. thank you. my husband says that one where god and the other children will take care of her no doubt about that school for the love of it's a pray to have such a family it is such a blessing or a good book and syria. some kids don't move much but there's no stopping her she once it's so three and five minutes. in the book and so far we're doing a list concerns both the state of health and the state of our family i think we can convention eight hours sounds and wish told her that she can have a good life. and she knows that does

a good deal of interesting news to her and entertaining things in this world to chill has 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 that i'd be glad if it 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 who i just wish that there were no tears and there was no pay.

here the reindeer is everything for the herders. and when it suffers. people do their best to help. but the distances are. and the roads are. predictable. will the roman need d.h.i. .