it was born 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 you can sleep on a cushion because she would cry when we touched her. yes i probably fell from the chair and i have 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.

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 they 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 than our. skin. portmore wiley's even some adults don't become aware of the fact that they are affected and. 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 and you always have brother can hit her mate with fooling 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'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. but 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 that if a mason and restore the limbs to a normal links. ok and how old are you seven why would a big girl. didn't

think i was an outsider in which an elder twin brother is a 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 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 and would 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. the woman who would shares my interests and principles. god willing we will go through life together and if it he answered with a 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.

which is when i was fifteen weeks pregnant my child was diagnosed with a just released. them but unfortunately there was an intern that had the time so i was not aware of how serious the condition actually is. 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 give or 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. 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 because 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 stuart 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 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 they began chasing the cat she lost her balance fell over and broke. that incident delayed treatment they even said that further treatment might be pointless but if no one 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. and. this is what is

a very painful. so what does it do. you just mean. here. 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 slammed 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 after being spent to so little. i didn't want to feel old 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 fracture. oh are you i'm 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 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 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. dr natalia below 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 i had treatment this is in clinical psychology realized that some simple methods could make life much easier for those parents. but i did today 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. 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 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 children are unlikely to be teased if they sense that the parents are also in a comfortable but i didn't i mean psychologically. our bush bush bush. world more or.

less a push against. her but don't overdo it go it would be gentle. you . kill you through with assault. 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 yogi exists. when the child was born i couldn't understand it was wrong with her she was like a job and her burns were soft and flexible. we didn't tamper with her lanes 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 his spine throw. a 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'm by her side . what's most difficult is making her realized that she must help herself by getting stronger through exercise the bit you grace. the board with the why do more menace to the children taint in the courtyard bowl it's they keep them there are missing. 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'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 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.

mission free accreditation free transport charges free. range month free. free. two types free. download free broadcast quality video for your media projects free media oh god r t dot com. the government no longer represents the british. the people are going to take the term. would. be a revolution in the judicial system to the edge of the. the way our.

yeah. both my parents were atheists

it's the same they were among those people who built the savior of the 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 and 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 most of the i felt that i would offend him if i didn't join the orthodox church with them. usually if a 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 for you 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 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 he'll 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 again i had a dream but i want. to visit some petersburg a lot of the players the public by not should 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 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 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 lessons

you only hear. 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. the children understand that d.s. is not like that 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 she has friends and the surge and 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 it difficult just desserts and i fear for his safety because she might fall from the chair she leans over the skin if i knew 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 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 but here they can do. what they like it's very important for parents to know how they children feel they should a lol 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 series meet. while it's so beautiful. thanks you're welcome. when the kids and i first met had 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 proceeds of. the going to sends me messages as soon as i am on the internet. love to show doing things 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 legislate she would use it to feed them with my own. that it would be for the good but she was only three years old and already as she was trying to help me. yeah

i knew. known as. well i wish you happiness and health. i hope you'll be condoms and well behaved. and i love you i love you. those. are. my husband's where the other children will take care of her no doubt about. the love of the pray to have such. it is such a blessing. some kids don't move much but there's no stopping her she once it's been five minutes.

and says all we're doing this concerns both the state of our health and this day develop. i think we can convention eight house house 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 where nobody needs her. honestly if i had a child diagnosed with all stewed 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 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.

there are twelve cities in the united states in which half of the people with hiv aids lives within a year of. over sixty two percent. with this is a problem that frankly is substantially preventable it was like the big elephant in the room and nobody wanted to talk about they were really good public health campaigns people were really focused on this problem you certainly should be able to. a lot less human suffering. technology innovation all the lives developments from around russia we.

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