gz. 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 they 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 to move all. these to 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's 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 that if i'm a sion and restore the limbs to a normal links. ok and how old are you seven what i want to big girl.

didn't think i was an outsider in which the elder twin brother is a totally healthy get. my younger brother is ok to. election is 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. it up to 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 to a mishap it was 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 not how much childhood came to an abrupt end with that. the will of god is omnipotent. i found my soul mate. the woman who shares my interests and principles. god willing we will go through life together richard. if we have to enjoy our trials and tribulations well. given that. most of our first child was born on the first to february two thousand and three. zero is when i was fifteen weeks pregnant my child was diagnosed with a disk you know that but unfortunately there was no internet at the time so 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 either give birth or 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 is how teenagers behave in similar situations. which is our second child but it is ok we had been under a great deal of pressure not to have a second child for you especially considering that my wife. would be running the risk of dying during childbirth to 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 pass. was the disease on to me by any chance to carry on with a kitten like playing with a kitten i do. 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 stuart genesis imperfecta to be inherited. the risk of those affected passing the disorder on to their children. had fractures 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. had been

mowed down and fractures. both arms. have fractured twice. happened when they were messing around the time i wasn't being attentive enough i didn't stop them and they're playing around . was that when i began chasing the camp she lost her balance fell over. that incident to lead 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. what is a very painful. so you know what does it hurt to. 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 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 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 over a different kind it's made of crystal. thank you thank you lord it's quite heavy yeah i have your than my cast. bush yes but as a rule i come here to meet the parents of other children suffering from auster janice's in perfect on the first and last. card when our daughter was born we had no idea of 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 and that she was the one who came up with the idea of setting up an association of parents with such children are not going as by the time 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. two months of the operation we're going to remove the costs today. i want it 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 children are unlikely to be. if they sense that the parents are also in a comfortable but i didn't i mean psychologically. our bush bush bush. if you like the world on more or. less a push against. her but don't overdo it. would be gentle. can you through with the socks. or 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 what was wrong with her she was like jalen her burns were soft and flexible. we didn't tamper with hellenes they just fixed and each time it got fractured she was in plaster for six weeks at a time she would simply fall down and break. weak muscles don't support a spine throw. by half hour walk is not to make her spine show through the process of compression. and 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 realized that she must help herself by getting stronger through exercise yes wish you guys. the board with the might be more menace to the children taint in the courtyard bowl it's good they keep playing their arms 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. she has she has admirers and that's a source of inspiration for her. there at the polo world. listen i want to invite you to attend the events you have

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. gray baron soonish are there for such a long time you miss him english very much.

least be cool language. programs and documentaries in arabic it's all here on. reporting from the world talks about six of the ip interviews intriguing story for you here. in trying. to find out more visit arabic t.v. dot com.

i.

pad. for. a long. both my parents were atheists it's the same 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. 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 do i felt that i would offend him if i didn't join the orthodox church with them. mission if the happiest i. look at that across here in this holy place is that they were the closets says see the entire family of royal musses was murdered in nineteen eighteen it is theirs and their holy remains were here. those of alexei the heir apparent and his sister's. 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 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 that would if you're a human being in the proper sense of the word like here on 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 again i have. dream that i wanted to visit st petersburg a lot of the players the public by nurtured it for twenty five years i yearned 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. and then i was 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 since i am not particularly fond of reading 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. 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 or as she chimes in when the boys or girls are discussing something she has friends and the certain fifth forms as well as her own. i discovered she copes pretty well without me sometimes she asks me to stir pick up books because she finds a discount doesn't deserve to go so 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 that's mine dream. girl 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 lead a 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 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 linda has a bit of a crush on nikita syrian eat. while it's so beautiful. thanks you're welcome. when the kids and i first met had planted to talk about always glad to rebel and that there was somebody else like me. explained in 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 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 it will be for the good will she has any three years old and already as she was trying to help me this year i knew. known as. el al i wish you happiness and health yes i hope you'll be cause i'm sick and well behaved. i love you i love you.

though thank you. my husband says one way of god the other children will take care of her no doubt about. the love of it's a pray to have such as. it is said to blessing. some kids don't move much but there's no stopping her she once it's been five minutes. the book says all we're doing this concerns both the state of health and this is day to valve. i 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 into taining things in this world is just she was never faced

a situation when nobody needs her. honestly if i had a child diagnosed with our studio system 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 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 pay.

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