[000:00:00;00] good afternoon, we have a difficult story today, because the life of little alyosha, who is only 6 years old, depends solely on the decision of his mother whether to give him medicine or not, and in a good way - this is medicine. he should have received yesterday the story, but the impenetrable human stupidity. today in our studio olesya anikina hello olesya. hello, what happened to you? i have a son. help what

happened? what reasons do they have for the fact that we have a decent family, we do not drink. we have house order everything is fine. my husband and i live well, they are not registered by the spouse, because he is the father of the child with us. of course, i have two children, but he is not inscribed on the certificate, he is a loner. yes, i think with a single mother. and why is he not included in his birth in children? i came to the registry office alone with a passport and wrote. well , alyosha for all the children. it didn’t fit in, that is, both the daughter and the son - it’s his that you have been living together for a long time already quite a long time ago 8 years means well, and now what is happening? what claims from guardianship to you should

be very serious if they are not just you to register if they want to take away one or two children from you , only alyosha, only alyosha . come on, polysaccharidos of the second type is a complex genetic disease. very rare. that's right. yes, you have been diagnosed for so long. well, to make this diagnosis is not so easy initially. when we came to the neurologist, she immediately said, i suspect that the child has a genetic disease. let's m-m take a blood test. well, accordingly, a narrow specialist cardiologist wrote out a referral, and we donated blood. the blood was ready in 2 months. e for

analysis. they were within the normal range of reference values, but there were some changes in the blood. still, they were asked to donate blood in addition, and they donated blood again, and the analysis came already 10 days later with a diagnosis of polysaccharidosis of the second type. so what did the doctors tell you, and the geneticist immediately said you need to take treatment immediately, otherwise 5 years. he will sit in your wheelchair. so you started taking this treatment. no, it didn't. why? and when the courier came for blood, which we donated the last test tube , he said, you will receive a very good compensation. after that, i got rejected.

why should i get some money if i want to treat a child? i don't sell it. and where does all the garbage froze it to you, you would have behaved the same way, but i don’t understand at all what kind of compensation is in question, what did he mean, i asked him again. do you mean the disability that we stand up says, no, i'm talking about another compensation. what well about it i have not specified. you don’t even know what he meant, but based on this dialogue, which, frankly, did not lead to anything, you concluded what to treat your child? you won't get it, i'm not that i won't treat it. me. i'm not going to sell it for research. here are the ones that you decided that you are selling it for research. where did you draw such a conclusion, if they pay me

compensation, if i am who pays you? what compensation? wait wait, i just don't i can see it. what kind of compensation are we talking about, who told you about it and the courier is only a courier, that you will receive compensation and that's it. you didn’t receive such information from anywhere else, and after that you decided that you would not treat the child, well, and in terms of physical condition. i watch him get better. if earlier we were often sick, now lyosha feels somatically healthy, he is without medication without medication without any therapy, and you decided that he did not need to be treated, but the guardianship authorities that's why i now suspect they want to take your baby away because you don't treat him. yes, how did the guardianship authorities find out what was going on with you? well, don't

treat a child. i suspect that there was a consultation and the geneticist of the president of the association of geneticists came to visit us in kurgan and looked at lyosha , and perhaps it was she who, yes, of the guardianship authorities conveyed the information that we need the guardianship authorities already. as i understand it, they began to take some measures , the summons, the court came. yes? let's go, look. here is a geneticist. as you said doctor of sciences, probably a professor. yes, of course, here is the courier. doctor of sciences chief geneticist of st. petersburg courier the courier outweighs, so i understood, no, the doctor and valentina ilyinishna and i talked, and she said genetics is hmm yes, but it’s completely new science is a dark

forest for everyone and that’s what you are now carrying. tell me, please, but she said, if mom does not agree, then no one has the right to force you to accept. this is the treatment of the organs. guardians believe that you need to stop considering you a mother and save the child. me they included in the chat the parents who are treating people, the children are being treated already. well, there are no healed children there, all the children there are severely disabled, who do not walk in wheelchairs. uh, who had a heart valve replacement, they eat through a gastrostomy tube because they don't have a swallowing reflex. and it scared you. that is, you decided that if you give your child the same

drugs as these children receive, then they will also sit on your chief’s invalid fortress. no, no one got out at all. can it genetic disease, it is not treated. well, it is again. and can you die? yes, i'm just asking the question to die. from him it can be so maybe these children whom you see in the chat are alive only because they receive drugs. maybe you just took a position that i don't know. i will not give him medicines for how long, but let him live. how much, well, without drugs, how much? well, it is necessary, but happy without chairs there without these here, well, it happens too. there are such parents. here is your solution. yes what no matter how long he lives. yes, i hope he lives a long time, but put the drugs. well, i can't afford to tell me why? well, what's the reason? duck is not present,

you will recover diseases it is impossible to recover, as from any other genetic disease. it's forever. i think we won't convince this mother today. i think that we need to act with other methods of the child, we'll see. i want to get to know him. let's get to know the baby, look at him. this is what the terrible doors brought the child to open in at any moment they can come to pick up their son. why, according to the appearance of his son, he was recorded as an invalid of cured children, there is no one who would be cured by these injections, and the longer we delay these injections, the better he

feels for experiments, i will not give him experiments. painted like this to ride a wheelchair . and the ears hurt already, no one hears through the nose, no one breathes, it’s bad, we’ll go to another city so that we can smoke where we’ll go, we’ll tear our passports, we’ll go into the forest, but we won’t give up the child to these people. how to give it to him so that he becomes a colleague then a smart child like that. if you take away, that's for sure he'll be a freak, so they come up with, i don't know, but if we don't agree, so why. well, why is all this? i myself will deal with it. i don't want to give to anyone. i don't want to give these injections, they don't

bring health. they cause disability in healthy patients. no, among those who give these injections. well, there is no single one, he is not a guinea pig. leave your son alone. here is my dear, my beloved, we will always be together with you. please tell me, and your son, as i understand it, is aware of everything that happens to him, yes, he is afraid of panic i didn’t tell him in detail, because he says his ears hurt, no one hears , he speaks badly. he tells it all himself, because we discuss it at home, and he hears it all. and he doesn't want to be treated either. as far as i understand, no, he doesn't want to. i believe in the mild stages of the stage, when people can

live and fully live up to an old age of up to 60 years, without taking treatment, when the body itself copes. he was born with this he lived to be 6 years old, thank god everything is fine. if there were any problems, they go to no ah, what's better over the years you say, here's the vision hearing. improved joint mobility. in our studio, we meet with the students of the great master pyotr naumovich fomenko . the theater, which he created this year , is 30 years old. he hypnotized me , stunned me and the man sat and thought. where? you're

hot, petrovich just sneaks into the cooler for some water empty in the night corridor. he told her the theater - this is a temple or dedicated acts, or get out. vaughn didn't even come close. conor, and then he said, you will come here to the theater and heal early on the table all this stool went. here so he shouted, cyril does not value life. damn, and don’t get carried away and said pyotr ivanovich, i love you, immediately fluffed up, why don’t natasha restrain yourself on saturday at the first point forward. maheev marinade helps

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storks manga passion fruit only at a tasty point and if he is a traitor, i will shoot him partisans, mortal. katya help us find these nonhumans who were given away. tell everything you know according to the laws of wartime

new personality series. let's invite to the studio a woman who has been living for many years in the deep forest of genetics, and this is the same medical luminary who came to your city, and with the help of which this diagnosis was made and the council approved it valentina ilyich larionova, doctor of genetics, doctor of sciences. let's take her to the studio. hello hello oles i have a very serious question for you. we haven't seen each other since november last year, when the neurologist molodets she suspected the diagnosis, moreover, it was more difficult. yes, it is very difficult, very difficult for doctors, we specifically teach this. this is a very difficult problem. she should suspect early, but it was not by chance that she got up

earlier, the sooner she suspected, the faster the missing enzyme led, and it begins to work in the body and the person. eh, well, how to say, it does not accumulate with fear, this one here and the person feels better and another clinical course. you understand that it was clear to everyone, diabetes. the first, like the sonorous gland collapsed, there is no insulin. if do not display it, which will be clear to everyone. here, in the same way, the genetic reason led to the fact that the enzyme, unfortunately, does not work for the baby. olesya said that everything was fine in the first test. we have already found out even at the consultation that we did not look at this particular enzyme for the first time, and all the other enzymes were in order, but this disease is associated with a defect in a certain enzyme. i clearly showed you at the consultation that your enzyme zero zero one norm starts from 10 and in my consultation, so that there are no discrepancies.

i wrote the fermen reduced a thousand times. it's almost zero. it does not work. and if it does not work, i explain what it leads to, then this disease can proceed along a very tough path, this is called this proud similar syndrome in our case. this, unfortunately, is the case, because the enzyme almost does not work. such mutations have occurred, if enough activity would be higher , the disease would also progress, too , without treatment it would be bad. well, it will be longer, but in this one. this must be done. here especially as it here for illness or disease. here, well tell me, it means that there are different substances in the cell. we have dna in the cell, you know everything. here it sits in the nucleus and commands everyone. well, a cell is very much like a society. there are regulators. so to speak, the elements. there are building elements and so without a cell without analysis. what are the symptoms?

what are the signs here that an enzyme suffers, which disassembles complex molecules into simple ones. if this is not done, then like garbage, the recycling plant stops working and garbage fills up all the streets of the city , a disaster develops in the body, the same catastrophe. and uh, these accumulated molecules, they hit everything, that we will now be transported again, kurgan let's see what state it is in now and then you will tell us, and according to external signs. is it possible to define this kind of disease? mi who receive treatment they themselves in a wheelchair in slowly turn into vegetables and so live out. well, yes, and until the age of 22, until twenty-three, i will not allow him to become disabled, the child is healthy. this is

my room. this is where i sleep. still understands this about the belly of the song together

we do exercises with it. they love cabbage, they also eat carrots, she also loves dandelions. well, of course, outwardly, what i see olesya allowed me today some results of medical uh investigations. they allowed alice to write everything as it should be. can i say a little, neatly, so look, then, of course, it is clear that the baby is sick. here we teach young doctors to look at precisely these facial features. well, firstly, this is a proud-looking option, so the coarsening of facial features, it will flow further more it will be oles unfortunately, aloud the child

will lose completely. unfortunately. here form the combined threshold of the heart. he will be serious. it will be arterial insufficiency. it may be a neutral stenosis. it's all about time. and you understand that the worst thing is that the valves of the heart are already affected. you know, we have such patients. so i personally led such a case on such valves, the infection sits down and, perhaps, in general, the institutional decorative child may die. you see, i watched it today. and of course, olesya you say he is absolutely healthy. he got better, maybe level. uh, the purity of infectious diseases will decrease, but that's it , that's all the improvement is over. you now have a chance to give your child 10-20 years of life, which you are depriving him of and not sit in a wheelchair first therapy this skin change is characteristic of this disease, yes , the only flour is polysaccharidosis that comes with skin changes, listen. and what to do or make this therapy i explain. yes, if

some protein is missing, hemophilia is not the eighth fact a person, bleeding, died, insulin, but no, insulin a person dies, while the disease does not have an enzyme, a person gets sick in time, develops threateningly more difficult, he still dies. and if left untreated, these children die enough. you cannot heal. you can only give him enzymes. yes , ethical therapy. pathogenetic means therapy in connection with understanding the mechanism of the disease, imagine what genetics has come to. progress in the case of this disease, special molecules are normalized. the so-called gaga they accumulate and we monitor the effectiveness of treatment. yeah, moreover, you know , i listened to him to climb. honestly surprised. we really, you know, here you are my colleague. i respect you, and i was very offended. hearing all this, and moreover, i will tell you this. well , what are you talking about, that your child will be taken away? well, here it is taken away from you

when they are being treated, when the treatment mother can attend the infusion brought to the infusion , the parents took it away from us today we are discussing the infusion, where even at home at home gentlemen, is this a dropper or what? it's a drip can you imagine what progress has reached humanity has learned to do this farm is not enough that we know the causes of the disease have learned to make the drug. billy sigh, brother was in russia government of the russian federation yes, this is a federal list of no courts. no need. here is the cure. take this, for so many years we have been harassing all state executive bodies, how much we have been fighting for the law on rare diseases that will come in the twelfth year, everything has already been done, oles, we still talked about what, when you have any doubts they began to speak there. we agreed with you that you choose the federal center. and once again, you can go there to choose from,

where the professionals you know work, this is the szd. let me name it. this is the best hospital. let's get it. forgive the flying institute, where genetics is just a profile of pediatric university, i can note my own, in fact , the first enzyme replacement therapy began at the university in 2007. i understand, but i will not take this territo-therapy, i will not sign. and consent to say goodbye to your child, because look in any case of this therapy, i will take away a capable son. i want to call my grandmother lyubov aleksandrovna come to us, please, hello lyubov aleksandrovna why does your daughter refuse to treat your grandson? i spoke to an orthopedist. she says you're afraid of the side

effect. well, let's say there will be a cramp. what 's terrible about this is only one injection and the cramp has passed, but then you will raise a child, at least up to sixty meters, and our task is to grow a tower. and what is your task? we have a task. continue to educate the child does not need to be buried. and whoever buries him, you bury him. we don’t bury him, we see, firstly, he has, uh, improvement in vision, a conversation of a simple thirtieth court to deprive your daughter of parental rights or restrictions in that, otherwise, the child cannot live with you, the state will be responsible for him. this means that the state will make the decision instead of you. let's hurry or not, in my opinion, it is obvious that all this is done only so that the child receives

the necessary therapy, so the question is for you one and very simple you will give the child to hurry, yes or no, if she gives consent and you i do not. me not. you are not good. i don’t want to watch convulsions and i don’t want to watch vypey seizures, you won’t watch the child be taken away and you won’t see him again , the point the doctor explained to you. if you do not give the drug, then the threshold of the heart will develop, then it will stall, then he will have problems with the joints, that he is now running and jumping, this is fine, but this will not last long. unfortunately, if you were normal and did not even want to treat the child, you would suggest to him that there is no treatment. it's okay that the treatment. might help him in

the future, and you scared him to death. valya had his currency, dad gave master lessons, mom, we draw very beautifully alice, we still have to draw to decorate. eyes set hands set. they were already rising and falling a little like that. in general, they didn’t know how to do anything. he has been for a long time. and yet, and the people over

there in the sky. she wants me to immediately fall ill and already die; all this is not useful. this is a poisonous race that you can go. but for health, this is the most useful thing to be a hero. i would have torn them apart with my fists in russia because it was time to deliver them to me. i love. yes, i live at home, we are treated at home. i really like it when i live and no one gets me for experiments. mom , do you think your child does not have enough somatic problems, he still needs to be psychologically hanged. how does a child know a story about experiments, but you hurt him, and also thought, you know, looking at this

here is the plot. i thought, you know what kind of thing this child is. you still have an older girl. and when all the predictions that the doctor is describing to you now will come true, when the younger child starts paying bad bad bad, what will happen to the older girl. do you think of her fate as a psychological fate, when she would grow up in the conditions of this deterioration, how will she strive for a mother, how will she get married? she, you are already in fact, instilling fear of her future yourself, without suspecting it. and if a girl is further away, will not be stupid dig in the textbook, yes, and suddenly he will understand that this is the same disease, how the same fit and recessive is transmitted. she suddenly realizes that she is a carrier and that she, too, has children like that, maybe everything is very creative, greetings to the fate of your eldest daughter, denis came to us far away. he is the executive director of a regional public organization for the disabled. let's

invite him to talk to you on the phone. hello, we managed to help many families with rare diseases, we managed to convince e parents in such situations, but, unfortunately, in this case there is no common sense. we talked with my grandmother on the phone for a long time and found out all these questions. we cleared up the questions. e, confirmation of the diagnosis and the need for therapy. and why did you communicate with your grandmother not with your mother, we met this family, at least we learned how a public organization in the summer, but 22 years old, but uh, then i asked the doctors, uh, to contact the parents so that they call us. well , mom, unfortunately she refused to communicate then, and all we could do was talk to

doctors to give some explanation. well, because if the parents do not want to communicate with the patient organization, then our hands are tied in this situation. we were told that you visited the chat for parents who have children. unfortunately, they also suffer from this disease or similar ones, so one of the mothers who you could see there in this chat came to us, maybe even to communicate with her, her name is aida nikitina and she wants to tell the story of her child who is receiving therapy . through the woods, pretty what i see and hear. this scary. i beg you, i beg you. and to change my mind, to rethink everything, to make the right decision, because i know mothers who lost theirs somewhere against the background of the fact that they did not treat. here's how you feel about it. as you say, what you are with in our organization, but looked at our pictures of the photograph, but

you never thought about the fact that these children whom you saw, they are already much older than your medicine child. as far as you know, if you read everything, it was registered in 2008 in russia and these children did not immediately receive treatment, and you are offered a unique opportunity six years ago offered for free. that's the problem. i didn’t even think, i prayed to the lord god that they would just give me this medicine. when he comes, he stole everything clear inside. she wants to give her all. i got nervous. ah, i

made the children nervous about what? to say when the dance says what a cry of the soul i am sure that there is not a single man here who would not catch it. oh, oh, we haven't had an all-girls final in a very long time. can you imagine what a historical moment final live friday on the first

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belly order to bring a pair of barcelona burger. and barcelona chicken burger at a bargain price in tasty and to the point, and also in abundance. just order through food delivery services. in the world of hundreds, you can't. iota says you can connect 50 gigs and 100 minutes at the lowest price in your region, you can iota. th hot thing 89, 99 immediately. let's get to know each other better. tell talk about yourself. at home, you sit in front of the tv and talk. well, you don't know, do you? we all do this in front of the tv and not like that still talking, i have 5.000 wow congratulations

let's take a clue. i always dreamed of being allowed into the cab, and the subway driver is usually for relatives. and if i become your relative, ready to play with me, who wants to become a millionaire is a gift, who wants to become a millionaire on saturdays at first how old was yours when they put him at 2 years old, and this is your child, yes, the youngest is similar to yours, of course it doesn’t look like, but that’s why they look like that’s why the syndrome and which was described by a woman scientist hunter and surnames are similar to each other. they are on their parents, when we were still diagnosed with this at the age of 2, and then another 4 months passed before we began to receive enzyme replacement therapy. all about what? i thought it was just to get it because it's a really

expensive drug. i thought in my head how much and how many tens of millions of rubles a year does our state pay? and how old is your child now 11 years old, he is 11 years old, you were in a hurry what age it turns out 4 we were 2 years 4 months old. that is, you are already on this therapy 9 years 9 years. well, he walks . everything is fine with us, moreover, circulation is on the background and yes, we have improved vision aloud , a fresh heart, too. we are under control. of course, we are constantly turning here, see the child. yes, six, and this is eleven. but they are practically the same height and that growth in absolutely the quality of life and the fact that it lives all the children that you have seen in a wheelchair is the reason why this happened in therapy? by no means a side effect of drugs

is the development of the disease itself. and there is another reason that this therapy does not penetrate the encephalic barrier does not enter the brain through the haemota, but now it first appeared in japan, now it is being developed in russia , which is a drug that penetrates the brain and will radically change the fate of patients with second mucopoleosis, such as all you need now to save the organs of the system child to wait for this therapy. we visited aida if you have and this is not convinced by the long-awaited pregnancy, and we were waiting for this child. the night is a long time ago. and that's how happy we were house of diagnosis everyone was crazy happy. but this diagnosis, of course, completely turned our lives around. we cried just days and nights, and tore our hair out.

i thought and prayed about one thing. the main thing is that there should be treatment. for my favorite boy. timur is very active with us, and the way of life where we go to practice chess during the drip is solving difficult logical problems that we were asked at the chess school. let's play with you flew nine. this is how we usually spend time in the hospital queues when we take a referral. the swan flew along the blue wing. what for example? now he will tell timur the number 1,000. he loves that this has been going on for so long. come on, come on, what number.

timur and i have a whole wall commendable with diplomas and medals, these are commercials. but this is a judo chess medal. for me, for example, every monday we are saved by energy, and the enzyme replacement therapy and the whole week we have no hassle, carefree play tennis with my brother, call him. this is how we can spend the whole evening. at timur has a dream profession of a coach. here's how well he does. well, guys, friendship has won, come to me, my boys are my favorite chicks. love you. i do not accept this disease. i can't, this is where someone can give a receipt that we will not have a serious side effect. after all, who should give you

such a receipt. now they've gone crazy. listen to me carefully tsatski ended. i am absolutely not interested in convincing you, because you have a wall here. let's look at the screen point of view, guardianship will hear in december 22. we were informed by the polyclinic that there is a family in the family. uh, a child is brought up who has a genetic disease, there is a threat to the child's health. and we are obliged, as the guardianship authorities were to take action. why was it customary to go to deprivation, but all positions are spelled out in our family code and here is a malicious evasion of the treatment of the child's voice information. mom on the phone refused to activate the refusal due to the fact that she read a lot of treatment data on the internet. i won't help her child. she believes that her child is healthy if the mother does not treat. it will lead to. uh, well, this disease is a disability. in any case , he will accept, then the treatment was already

provided with a quota, that is, everything is ready for free. mom just needs to agree to treatment and go to moscow , the case is in court by witnesses. of course, we will first of all invite these medical workers, because in other matters to my mother, there are no complaints. well, any lawsuit is, among other things, prevention, the most, uh, great hope. with us, that mom, uh, will hear all the doctors will take measures for treatment, the child will remain healthy in our family. i would like to say a huge thank you. from the guardianship authorities for efficiency for rigidity for the right decision. if you love your child. well, think about how he will feel if he is now living from the family in order to provide medical care, because it's not just like, yes, uh, for one day, they will take your child away. that is, it is possible and borders and will be deprived of parental rights. they can take the child.

you have to create it somehow. let's agree on this. but what if you still make the right decision, it is in your hands now and start treating your son, then we will exchange contacts with you. and we, through the committee, will do everything to ensure that the child is not taken away from you, but your son needs help. you see, your assistance, including the state, will now clearly target deprivation and restriction. we will help so that the child is not taken away if medical assistance is provided, do you have normal? we are sitting here, who are fighting for your child. excuse me, there is the government of the russian federation, we will start therapy, which means you must understand that now, if you are trying to fool everyone and go to the hospital. it just won't work for you. this is not to be nullified. the only thing that can happen. now it will just be

a postponement of the trial. that's all, but this does not mean that the guardianship authorities will now withdraw their application, and then in court, when you appear in court, which will bring. you will bring all the documents that you started to undergo treatment. e what are you all doing? and this will be the basis for the court not to decide your parents are right at the moment, but this does not mean that you will cease to be under the control of the guardianship authorities, you understand, if it is not cut, we agreed. we can be sure of what you just said in this studio yes, yes, yes. today we arrived at the hospital to start tera and her lyosha that we arrived, right? we

were assigned a room. here we are just getting started. distribute things later. we start treatment. how could you climb on a child? i want to save my grandson from mine minor daughter. at first no to me, as if having sex once. he is not needed, that is , either seriously, or let's say goodbye to some, an urgent need to become a mother, but at the age of 15. for me, yes, pregnancy did not stop in shorts. you just