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 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 you always have brother can hit her they were 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 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 that they missed to fix the deformities with flexible titanium pins to remedy the end of that information and restore the limbs to a normal links creations. ok. seven what i want to go.

i didn't think i was an outsider when you reach the elder twin brother totally healthy i get. my younger brothers 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 he 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 i would be there 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 mates and the woman who'd shares my interests and principles was legally god willing we will go through life together and if it he stands with the flow 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 of february two thousand and three.

when i was fifteen weeks pregnant my child was diagnosed with the distilled. them but unfortunately there was no internet at the time so i was not aware of how serious the condition actually is. in geneticist who was in the challenge 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. just staring at each other and shrugging our 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. be 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 a kitten i didn't pick up 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 in fact 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 an 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. was that when i began tracing the camp she lost her balance fell over and broke. that incident to lay the 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. this is born is

a very painful. so what does it hurt. my ears to hear. i hear hear. that's where it's supposed. to heard 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 own 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 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 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. doctor entirely a bill over has spent years treating children afflicted with the disease she was the one who came up with the idea of sitting up in the. 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 me 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.

every 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. all together. and. it was almost ten to 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. and because i noticed children are unlikely to be. if they sense that the parents are also on a comfortable idea i mean psychologically a. scam. our bush bush bush. if you like world more or. less

a push against. her but don't overdo it go it would be gentle. you. kill you through with the salk. can you reach out. more rice or 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 was wrong with her she was like jabbing her burns was soft and flexible. we didn't tamper with hellenes 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. muscles

don't support a spine. by half hour walk is not to make her spine show through the process of compression. i do exercises with her. and 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 but if. you grace. the board with the 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 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 has 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. grey it's balancing this all the long time you miss him or such very much. wealthy british style some time to.

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both my parents were atheists. 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 what 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. hurting his feelings would really not be a nice thing to do and wish to do i felt that i would offend him if i didn't join the orthodox church with them. fish and if the happiest i. look at that across here in this holy place is that the what the closets says see

the entire family of royal monsters was murdered in nineteen eighteen it is there and their holy remains with. those of alexei the heir apparent and his sister's. that's why this is a holy place anymore 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 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 front on the thing is that because 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 healing almost anything is within your powers but i just feel i may have become somewhat brave it when i chose to rely on god's will again i had a dream that i want. to visit some petersburg a lot of the players the public by nurtured it for twenty five years i yearn to go that would give those and finally my dream came true that if you abandon yourself

to god's will and 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. i don't like reading or writing writing takes too much time and. i am not particularly fond of reading mathematics is more

interesting for you we do exercises and drug patterns in our math classes you only hear. you get a yeah i am going to be an artist the worst thing is because drawing that's what i like most of all. 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. some times she even chases other children as she drives her wheelchair around the room she chimes then when the boys or girls are discussing something she has friends and the certain fifth forms as well as her own also. discovered she copes pretty well without me sometimes she asks me to stir pick up books because she finds a disappointment doesn't deserve to go so 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 her school i'd get a job that's 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 that 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 delete a normal life obviously 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 for. a new group ours 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 searing heat. that while it's so beautiful. thanks here will come. 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 likes playing on line games. if i find a new game he placed with me was on the press. circled us sends me messages as soon as i am on the internet. love you shouldn't since with children in wheelchairs i would love to meet more people so that i could visit them for birthdays and other parties. gave birth to twins this kid would come from the kitchen carrying the baby bottle legit and she would use it to feed them with my own. but

a good bit of the good will she was any three years old and already she was trying to help me. yeah i knew. known as. el al i wish you happiness and health. i hope we'll be converse and well behaved. and i love you i love you. close. to. my husband where the other children will take care of her no doubt about. the love of the pray to have such a family it is said to blessing. some

kids don't move much but there's no stopping her she one sits in five minutes. and says all we're doing really this concerns both the state of health and this day develop. they 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 entertaining things in this world she was never faced a situation where nobody needs her. honestly if i had a child diagnosed with all stewed genesis perfect i wouldn't have a problem with that i 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 with any parent has to be proud of such a child i just wish that there were no tears and there was no pay.

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

moment. both. to close. the speed. of her. with. a missile. but. just see. it and. come out and run a little. to

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