it was born the doctors told us she had multiple fractures they also said lisa would be a difficult child to handle she was bedridden the first year after she had to eat and sleep on a cushion because she would cry when we touched her. yes i probably fell from the chair and i was on 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. i. 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 they are mineral metabolism is in good order the ailment is due to faulty college information like you as the main protein in connective tissue college in is the basis of the human skeleton more than god.

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 fracture as. there is a swelling beneath the eye here did you hit something near as a brother can hit her it with feeling around well well here we have a person that we can already sent 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 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. the patients he elizabeth elisa oestrogen this is simple fact she wouldn't wear planning surgery for today that they missed to fix the deformities with flexible titanium pins to remedy angular to familiar and restore the limbs to a normal links. oh ok and how old are you

seven why would a big girl. didn't think i was an outsider when you reach the elder twin brother totally healthy again . 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 due to a mishap as a result of both my thighs fractured at the same time that morning when the doctor arrived he said just don't touch him don't touch him could you announce how much childhood came to an abrupt end with. the will of god is omnipotent. in the initial thoughts i found my soul mate. the woman who'd shares my interests and principles was legally god willing we will go through life together and it should he ended with the thought if we have to enjoy our trials and tribulations well but also be. but then you've given.

us our first child was born on the first to february two thousand and three. when i was fifteen weeks pregnant my child was diagnosed with the disorder. that. there was no internet at the time i was not aware of how serious the condition actually is. geneticist who is in charge of our sin he said to me you had been warned about everything it was your decision to i think you ought to terminate the pregnancy. my second pregnancy was out of the blue none of us could figure out when it could have happened we went through just staring at each other and shrugging our shoulders that is 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 kitten is like playing with a kitten i didn't because the disease did i. didn't. know you were a didn't either but i did i pass 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 affected passing

the disorder on to their children. 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 intensive care. and fractures. both arms. have fractured twice. happened when they were messing around at the time i wasn't being attentive enough i didn't stop them and they're playing around. like that when they began chasing the cat she lost her balance fell over and broke. that incident to lead treatment they even said that further treatment might be pointless but if none was provided immediately then should 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. the system one is a very painful. so what does it do. you. hear. that's where it's supposed. to heard yesterday to remember now ok it's best to forget about it. came with me to the lift. and that was that 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 tough to be honest but it's a little. i didn't want to feel won't all 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 stricture. 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. as a rule i come here to meet the parents of other children suffering from austin genesis imperfecta first and last. are 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 with dr natale 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 societe of parents with such children. by the time this is in clinical psychology realized that some simple methods could make life much easier for those parents. but 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 this so see. it. 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. 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 that children are unlikely to be. if they sense that the parents are also on a comfortable but i do i mean psychologically

a. scam. our bush bush bush. if you like. the world more or. less or push against. her but don't overdo it so it would be gentle. your. kill you through with the salt. can you reach out. well or do the same with the other hand do you need to rest against it closer toes now it's like a yoga exercise. when the child was born i couldn't understand it was wrong with her she was like driving 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 his spine throw. a half hour walk is not to make a spine show through the process of compression. i do exercises with. one so i think she feels more comfortable when by her side. what's most difficult is making her realized that she must help herself by getting stronger through exercise. wish you guys. the borders now might be more menace to the children taint in the courtyard bowl it's good they keep playing their arm's length then i can't take part in simpler 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. she knows she has admirers and that's a source of inspiration. there are though. 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. graduates haven't seen each other for a long time you miss him. very much.

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close to get. please. please please. please

. both my parents were atheists it's the same they were among those people who built the soviet union realty and in those days it wasn't all that easy to express your faith here in the twentieth century. but 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 my. hurting his feelings would really not be a nice thing to do and wish to i felt that i would offend him if i didn't join the orthodox church of. his nation.

look at that across here in this holy place 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 alexei 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 say drug phones that i 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 because see life as something beyond your rachel is something you can't cope with but but if you're a human being in the proper sense of the word like here on almost anything is within your powers with you but i just feel i may have become somewhat braver but i chose to rely on god's will i had a dream but i want. to visit st petersburg the parish the public by nurtured it for

twenty five years or younger to go that would give the dolphins 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 ok like all children. i don't know what 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 it could take i am not particularly fond of reading

mathematics is more interesting for you we do exercises and drug patterns in our math classes you all. 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 d.s. 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 then when the boys or girls are discussing something and she has friends and the certain fifth forms as well as her own course. descriptive she told space he will without me sometimes she asks me to stack pick up bokes because

she finds it difficult. so i fear for his safety because she might fall from the chair she leans over. a fine use that somebody was taking good care of her school i'd get a job bad mine dream. girl it 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 that they need to know that other children have been diagnosed with the same disease but the elite in normal life all the same. 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 a risk by doing so but it's a risk worth taking because you know why you are taking it for. a number of 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 siri. 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 with the likes playing on line games. if i find a new game he placed with me was on the proceeds. going to sends me messages as soon as i'm on the internet. other 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 my defense she would use it to feed them with. their good bit

of the good but she was only three years old and already she was trying to help me . i knew that. known as. i wish you happiness and health. i hope you'll be caught and well behaved. i love you i love you. blow out. my husband says that when we were god the other children would take care of her no doubt about that school for the love of it's a great to have such a large family it is such a blessing we're going to syria.

some kids don't move much but there's no stopping her she was sits in five minutes . but also says all we're doing this concerns both the state of our health them to state of our family i think we can convention and house to house and told her that she can have a good life. she knows that does a good deal of interesting useful and entertaining 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 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 i just wish that there were no tears and there was no pain. sigrid love or a jury to mccurry was able to build a new most sophisticated robot which on course it really doesn't give a dollar amount anything turns mission to teach me creation why it should care about humans and groups this is why you should care only on the altar you dog. here the reindeer is everything for the herders. and when it suffers.

people build their best to help go out. but the distances are. and the roads six are. six

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