• 31/08/2022
• By wizewebsite
• 481 Views

She wanted to have a little dancer, now she is fighting for every day<

”It's exactly!As if Cher had spoken to me: this is not the end, I am at the bottom now, but I will be proud again!Times are bad but i'm out of solid dough.I will show you what is in me, ”says the songs of the singer Cher Marie Vaněčková.

Multiple champion in abdominal tanks, successful dancer performing in television shows, show.Last time with Dan endless.Very handsome slim young woman with almond eyes and raven hair to waist, with a charming smile.Do not know anything more about her and see her only on TV, you say, but she's lucky!

Happiness is the fly only golden

"Do you think nothing can stop you anymore and suddenly it's here.Not by your own guilt you must download the engines to a minimum and go out in the hall.A lot of people leave your dream ship.But then suddenly you will see that the hall remained and fits firmly, ”explains the woman quietly.Eyes folded to the ground, in the hands of something takes over.He doesn't complain, fights!

"Every minute is worth.Every night service, every hug, every loving view, each completed form asking for money, every tear, every feeling of hope and hopelessness, every miracle of the moment, ”says Marie about life with the twelve -year -old daughter Marianka.

I enter with mixed feelings in a large room that dominates only an unusually large triple bed.I know clearly that compassion is not in place.However, I cannot estimate my reactions.I am the mother of two children and the threat of incurable illness over each of us hangs like Damokl's sword.I perceive the danger of endangered happiness sometimes extremely intensely.

On one bed lies a little girl with long spacing hair, bright eyes and a beautiful smile.After mum.Holds a cell phone in hand, on the right plays TV.

”Until now, we didn't really know what television was, but now?Good thing we have with the songs, ”smiles my mother and gives me fragrant coffee."What would we do now without television," he adds, turning his head to his daughter.

Looking on asking her consent."I can't do anything else.So I watch a cell phone or TV, ”explains the nice lady to me.

"I was on the spine surgery, so I can't move at all," he adds, showing that he can only raise his hands in his elbow and turn his head.

”Will you fix you that leg?Lift her a little.So.Cool.Thank you, ”he asks for help basically the only guardian and most important person in life: mum.

”Marianance collapsed the spine due to the disease and the body began to crowd.It had to be straightened using the titanium rod to make the lungs and other organs more space.To be able to breathe better, ”Mother's reasoning operation explains the reason for the demanding operation.

He adds that some girls in the age of age with the same diagnosis are already connected to the lung fan."The lung volume is reduced by deformation of the spine so much that they cannot oxygenate the body and even deal with common infections," Marie says.

The magical creation of life

Marie describes her second pregnancy as an idyllic.”The older son was in the world in the fifth month, and then I had to lie in the hospital for two months.But I enjoyed my pregnancy with Marianka, ”says my mother who, as a dancer, operated the abdominal dances to a high stage of pregnancy.

"The circular movements of the pelvis, which are performed on this type of dances, beautifully swing a baby," explains.I praise the birth itself.

"Was great.I had no overall anesthesia and a little miracle showed me immediately.She was absolutely perfect baby, ”he recalls dreamily with a slight smile.

"Marianka was very nice, soon after giving birth I started working again," adds.She was looking forward to having a small dancer.But a medical examination at the age of two changed their cool life full of dreams."The doctor did not seem to Marianka, she came out," Maruška laughs.She describes that her daughter was very calm, stood but did not want to roll her.It was not appropriately active, so they had to be neurology.

"Doctors were betting on poor thyroid function," explains Marie Vaněčková.They sent them to Brno from neurology.They waited three months for the results.

"I called before Christmas, but the results were not yet.They have already invited us to Brno after the holidays, ”says.A definitive diagnosis fell.It's a SMA.Spinal muscular atrophy or spinal muscle atrophy.”I was still very positive.I thought it was a disease like any other, that we would give it, that the daughter would cure in a few days, ”says.

Then the nurse explained to her what it actually means."

That the muscles will continue to weaken that Marianka will never be able to move herself, that she will sag everything including internal organs, ”Marie describes the meeting with reality. That the muscles will continue to weaken that Marianka will never be able to move herself, that she will sag everything including internal organs, ”Marie describes the meeting with reality.

”Well, what did I do right after we returned home?I searched everything on the Internet, ”says Marie and swallows dry."A pak jsem se složila,” dodává tiše.The color of the voice has changed her, the look that he had risen.She slightly looked away from the bed of the girl."Říkala jsem si: tak a je konec.We end, ”her voice trembles, tears jump into the corners of the folded eyes.

„Ráno jsem se probudila a v telefonu jsem měla moc nepřijatých hovorů,” snaží se pokračovat ve vyprávění," jak jsem večer všem volala.I wanted to hear from someone close to that it is not true that the disease can be treated.And instead I found an e -mail in the morning: She was born to you because you can do it! ”

Her eyes are poured with tears.Cannot continue the narration.

I turn my head slightly, I would defend myself visible, but I can't help myself.Tears are roaming and I try to wipe them up quickly with the back of my hand.Then Marie takes a breath again."A od té doby tady tak žijeme.That we can do it, ”he says in a tearful voice.

Tears her Kana on her face.The scaled voice attracts a lying girl.So far her attention has belonged to a mobile phone, but the tearful voice of her mother will upset the girl so much that she dials her head and looks up to tears running away."No, mami!,” zazní protestně a částečně naštvaně.

Maruška tries to pick up in a few seconds. Vždyť tím dala opět svému dítěti najevo, že"něco” není v pořádku. Že je"ta” holčička s"tou” nemocí a že"tyto” děti dodnes nemají šanci na vyléčení.

Maminka se s láskyplným pohledem a s vysvětlením mezi řádky pro mě omlouvá milované holčičce:"Už máme tolik zážitků, že je to někdy až moc, víš.But nothing, sorry, ”he regrets that she has not managed emotions.I don't stop marveling how strong this woman must be.What have she experienced?

The path is thorns paved

Her husband left her and left for another woman.Even before he managed to pay the installments to the apartment, which was mostly paid by her mother, and so she lost the apartment.Now the rent pays 11 thousand crowns.From the state receives a contribution to a disabled child without a hundred crowns 10 thousand."Z toho bychom měly spolu vyžít,” upozorňuje.

When she was the worst, her mother died.

"I cried so much only when I learned about my daughter's illness," he admits.

After the operation, she takes care of her daughter all alone, unless she pays seven hundred per night for an assistant to hold her, gets up to her daughter and positions her at night twenty -five times.

Marianka had two pneumonia last year.Infectious diseases can be for children with SMA fatal.Every rhyme, every mucus is a big problem.

"They can't cough mucus cough.And pneumonia may also cause these children to overload the body.Perhaps so that they are a lot of confesses that they do not sleep well, they do not rest, ”explains Marie's tricky illness.

Last January they ended up in the hospital in the ICU."Lékaři se rozhodovali, že nás převezou do Olomouce, aby Mariance otevřeli hrudník,” připomíná vážnost situace s tím, že"tyto” děti potřebují mít svůj každodenní nenarušený režim.

"The brain is not well oxygenated because the lungs work slowly so they need to sleep much more.Soé narušovaný spánek neustálým polohováním dobu potřebného odpočinku prodlužuje,” dodává.

Is not a success as a success

Diseases are associated with school problems.

"Arrive at 8.The hour is unthinkable for us, ”explains Maruška.Long diseases and stays in the hospital also caused problems with grades.

"I'm afraid I will have four," sighed Marianka, who enjoys art, physics and English at school."Pro mě je teď třeba velice důležité, že sis sama podala čaj a napila ses.Sam!These are important progress, ”praises her daughter Mommy.

At the time of convalescence after surgery, schools are not doing so far.The doctors of the little patient told that she should have peace of bed and do what she likes.And so he looks at Ocko, stays on social networks and shoots video clips that she stores in a special application.And has successes. I sami"mjúzři”, tedy ti, kteří natáčí hudební klipy, Mariančiny klipy ukazují.

The days of fulfilled wishes.Not just think of each other

Before the operation, she wanted to fulfill her little lady, so the girls went to the meeting of Mjurů to Prague."Oni šli pochod Prahou až k Náplavce,” vypráví Marianka a svítí jí očička.With the acclaimed mjudry she filmed video clips."Byla zima jako blázen.We had red noses, but we survived it in health and Marianka enjoyed it very much, ”says my mother.About two years ago she wrote a fairy tale about the sea fairies.

”Despite the adversity of fate, we both prefer our dancing together.Therefore, I try to invent movements and variations of dance for girls in a wheelchair, ”explains the woman who has been leading the Orianadance school for years and organizes a dance show with the proceeds.And not just think of himself and his daughter.Help travels to other needed children and associations.They count each crown themselves.The fairy tale about the sea fairies in which the mother and daughter play and dance together have three reprises in Zlín.

"I would like to organize a tour with our fairy tale throughout the Czech Republic to withdraw money for the camp we organize for girls with spinal muscle atrophy," says Maruška Vaněčková.

Every year in the summer goes to the sea to the spa town with the beautiful San Benedetto promenades.It is a dance stay organized by Marie for 20 to 30 people: in the center of interest, of course, the little dancers are located.

Marie also invented and organized two suburban camps."Chtěla jsem, aby měla Marianka kamarády.It would be difficult to create friendly ties when it was socially isolated, ”explains mother, adding that they will not take a daughter without assistance to the ordinary camp and the rings without assistance.

Because the camps were very successful, the belly dancer Maruška decided to organize the camp for the sick girls."Vznikl tak projekt s názvem Světový tábor.We traveled virtually by interesting cities around the world, ”explains the organizer.One day we were in Hawaii, the next day visited Paris.We organized Miss World including interviews and free discipline.

"The girls were preparing a costume, having to sing or play something," explains Marie."Umístila jsem se na druhém místě,” raduje se ve vzpomínkách Marianka."Já už mám hlad,” říká tenkým hláskem malá slečna.

Mum wants to tell you how to move the intestines after surgery, but a little lady no longer has a standing."Mami, prosím Tě, odkryj mě a zvedni mi tu nohu nahoru,” požádá si o asistenci.I'm going to stop.How hard must be to ask for every change of position, move legs, turn.For a healthy person totally unimaginable.

Sick power or little?

"I would like Marianka to sing," Marie says.In order not to be a small patient over time dependent on the fan, it lies on the activities of the lungs."Sfoukáváme svíčky, foukáme do trenažéru, masírujeme tělíčko.Soé se snažím, aby hrála na flétničku, ale to už musíme nutit, že, Marianko?” dodává.

A lying little girl conjures up a lovely shy smile.I realize that in a moment she would start chasing boys and her blush on her cheeks would enchant many hearts of a teenage boy. Místo toho bojuje o každou"normální” chvilku.

”We also go to salt swimming here on the southern slopes. Marianka se tam naučila sama držet hlavu a zpevnila tělo,” vysvětluje maminka s tím, že"těmto” dětem pomáhá moře.The longer they are at the sea, the more they improve their respiratory and motion functions.

In the period after surgery, each movement is very complex.Any transport from the house must only be carried out by an ambulance, on a stretcher and hence the prescription of the doctor.The problem suddenly for mum will become quite common things of daily use: purchase, visit mail or authorities.

Cannot leave a seriously ill child after a demanding spine surgery itself and the assistance to her daughter home must always pay.Grandmother has no one.

"Marianka is very ill, but she is not so ill to have the assistance of houses prescribed," Marie explains to me.Stands leaning against the bed, transfer the weight to the other leg, throws his head… considers what to add to it.

I wonder how the baby should be sick to get assistance.Does Marie fight with windmills?

"Such a service is said to be only for children or patients on the breathing apparatus or with the stomach probe," he adds after a while. Polkne a pokračuje:"A tak bojuji, jak se dá, a děkuji, že je moje Marianka vlastně na tom ještě dobře.”

“Today I see everything is much more complicated than I have ever been able to imagine. Je ale rozhodně nezbytné přijmout vozíček,atbytek sil či daleko rychlejší unavitelnost a další s nemocí spojené problémy jako fakt,” svěřuje se tanečnice

Marie, who is trying to prepare her daughter's beautiful life.

„Bylo nutné nejprve připravit vše potřebné jak doma, tak i třeba ve škole,” vysvětluje a vyjmenovává nejdůležitější změny: místo na polohování a odpočinek, vyjednání individuálního plánu přes speciální centrum, plošinu pro přejezd do dalších učeben, součinnost a dopomoc asistenta pedagoga a vůbec celého učitelského sboru.

„Nelze strkat hlavu do písku a tvářit se, že to, co stačí nám zdravým lidem, může stačit jako vybavení člověku s postižením, to, co zvládne zdravé dítě ve škole, musí zvládnout i dítě tělesně postižené,” vysvětluje matka.

The most important thing is to ensure a man with a bright intellect who perceives everything very well, so that he does not feel the handicap towards others."V opačném případě je to nelidská lhostejnost,” myslí si.

Treatment for 8 million per year

He looks in the future as far as possible to optimistic.There has been a treatment that is very expensive, moving in the order of millions but can help.

“For the year this treatment will cost more than 8 million.But it is important, however, that the possibility of this terrible and insidious disease is already stop. U velmi malých dětí jsou dokonce i známky zlepšení stavu a studie dokazují efektivnost léčby,” raduje se Maruška Vaněčková.

At every moment of her life, it is entirely evident that she moves on the sinusoid curve.Up and down."Bohužel nám zatím léčbu pojišťovna telefonicky zamítla,” dodává zklamaně.But then straightens and admits with a spark of hope in the voice:

„My to ale nevzdáme!”

Spinal muscle atrophy (SMA) (SMA - Spinal muscular atrophy) are congenital diseases in which the muscles are gradually decreasing and thus the ability to move.More lower limbs are affected than the upper limbs, the patients also have difficulty swallowing, and later with breathing.This disease does not affect the intellect.The disease procedure is individual.One of the serious frequent complications is the breathing insufficiency that can become the cause of death.

I look at my mother with my daughter for a very difficult time and I have the only support in my son and brother.The only medicine for my sore soul is everyday little success in convalescence, my dance and also the help of people from outside.The collection of Charity Zlín helps us greatly.If you decide to help us, you can contribute to č.at.115-427 495 0247/0100.Marianka has a lot of big wishes: she wants to be graphic artist, travel, perhaps to the American Disneyland, longs for swimming with dolphins.I hope in a dream the biggest one: to have a man side by side that would be the big arms for both of us.