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. she had to eat and sleep on a cushion because she would cry when we touched her. 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.

what. she. needs 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 and is the basis of the human skeleton more. to portman wiley's 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 i hear that you hit something and you always have brother can hear 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 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. will soon be patient he elizabeth elisa. this is simple fact she wouldn't wear planning surgery for today that they missed to fix the deformities with flexible titanium pens to remedy that if i'm a sion and restore the limbs to a normal links creations. ok well do you settle on why i want to go.

i didn't think i was an outsider going in which the elder twin brother is a totally healthy again. my younger brother is ok to. 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 i would be there that morning when the doctor arrived he said just don't touch him don't touch him you know not 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'd shares my interests and principles of god willing we will go through life together in egypt he stands with the thought if we have to enjoy our trials and tribulations well so 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. that but unfortunately 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 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. it 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. carry on with a kid like playing with kittens i didn't pick up the disease. you 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 in fact passing the disorder on to their children.

in the red 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. that 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 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 to the board 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 list. and that was it then they took me away. and after that i didn't feel anything. but i said lance 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 interest but it's a 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 meet 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 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 she was the one who came up with the idea of sitting up in the. parents with such children. by the time this is on 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 had this 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 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. 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 a. scam. our bush bush bush. feel like. the 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. alright 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 job and her bones were soft and flexible. we didn't temp i was 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 a spine. by half hour walk is not to make a spine show through the process of compression. but 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 realize that she must help herself by getting stronger through exercise if. you grace. the board with the might be more menace to the children taint in the courtyard bowl it's good they keep it to arms length then i can take part in simplified games because there aren't enough girls around she doesn't need contact with other people i see that she wants to to communicate. the world. 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 inside and. by the way coming to. grab a balancing issue all the time you miss him. very much .

download the official application to yourself choose your language stream quality and enjoy your favorite touch if you're away from your television all it just doesn't matter how would your mobile device if you could watch ati anytime anywhere . else. science technology innovation all the developments around russia we've got the future covered. the worst journalistic. white house of the day a radio guy and. they click. on what you watch closely to do because you've never seen anything like this on call.

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both my parents were atheists this is to say they were among those people who with bills to say via the union were living and in those days it wasn't all that easy to express your faith here in the twentieth century where the idea of it when i started to live on my own then when 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 wish to leave i felt that i would offend him if i didn't join the orthodox church with the me. fish nation. look at that across here in this holy place of the what the law says see the entire family of royal must as was murdered in nineteen eighteen it is this 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 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 because see life as something beyond your rachel is something you can't cope with but that 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 again i had a dream that i want. to visit st petersburg will blow the players the public by nurtured it for twenty five years i yearn to go that would give those who 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. but 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 i don't like reading or writing writing takes too much time and so it could take 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. we get a yeah i'm going to be an artist over the years because drawing that's what i like most of all. this beautiful food the children understand that lisa 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. forms as well as her own also. discovered she told space he will without me sometimes she asks me to stack pick up pokes 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 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. 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 and 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 the 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. oh 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 who the belie explained 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 am on the internet. for sure 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 would come from the kitchen carrying the baby brought to life just she would use it to feed them with. their good bit of good will 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. go out. but then my husband says that when where god the other children will take care of her no doubt about that school for the love of it's great to have such a family it is such a blessing or a good looker. syria. some kids don't move much but there's no stopping her she once it's been five minutes.

but also says all we're doing really this concerns both the state of our health um to state of our family i think we can convention and house to house and told her that she can have a good life. and she knows that does a good deal of interesting news for the name to taining things in this world 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 childhood i just wish that there were no tears and there was no pay.

you know how sometimes you see a story and it seems so for life you think you understand it and then you glimpse something else and you hear or see some other part of it and realize everything you thought you don't know i'm tom harpur welcome to the big picture. wealthy british style. sometimes the title of.

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