The doctors said that Pavlik a long time to live and better to give birth to the next. Today the son of Snjezana Mitya almost 18, she has changed the law, has made registration in Russia of the desired drug. Why, years later, the children still treat the “in court” and what is now engaged in organization “hunter syndrome”, which is headed by Snezhana.
Snezhana and Pavlik. Photo: Yefim, Richman
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The feeling that we live with the bomb in the stomach
– What is it all for what therapy, if the child will not be able to study at the Institute, and the toilet will go in a diaper? – ask me a question some moms whose children have diagnosed “mucopolysaccharidosis”. I answer harshly: what do you prefer, year after year, in the morning, kiss your child or drive him to the cemetery? – says Snezhana Mitina, President of the Interregional charitable public organization “hunter syndrome”. This organization has been helping people suffering from a very rare genetic disease, mucopolysaccharidosis (MPs).
Child Snjezana diagnosis “mucopolysaccharidosis type II” put a little more than 15 years ago, when Pavlik was 2 years and 9 months. The doctors said that Pavlik a long time to live and better to give birth to the next. And she was trying to find some information about this disease, about which I never heard of.
– We went to the Lenin library, flipping through different medical books and found in the textbook on genetics is only one paragraph in small lettering on yellow pages it was written that the children with mucopolysaccharidosis type II survive at least until six to eight years and die in agony, in connection with disease severity.
Information illustrated little black-and-white photograph of a mutilated child’s illness. Very terrible photo, brutal, hard, she still stands before my eyes. No more information on Russian language was not, including on the Internet. In General, there was a feeling that living with a bomb in the stomach, it is ticking and you don’t know when will explode.
I had to learn to live not in theory, not somehow, but here and now, and understand that we will not always be with Pasha.
The child has learned something, but once you stop doing it
Tears flowed around the clock, there was a sense that the terms turned off the light, in the dark and not know where the exit is. You’re just like my precious child, who also has not changed, but everything around has changed dramatically. I want to open my eyes and Wake up.
In this condition it was necessary to go to work – then Snezhana worked as a legal counsel of one of the Moscow police Department. Increasingly, she had to take sick leave, life became harder, Pavlik lost the skills.
– It seemed to me that if the child learned something is forever. But I started to read the literature, not in Russian, translating on the Internet using online translator, and all said that, for example, if the child learned to go to the potty, then one day stop doing it. And so it happened.
Had to take it all in, or just afraid to Wake up. In the morning, for example, go to the Ministry or somewhere else, look for Pavlik treatment, back to the evening and realize that the child is worse than it was when you left.
It was certainly scary. Later, when he began treatment, I was returning from a mission, saw that the child is not worse – it was such a feeling of flight and happiness.
But before that sensation of flight was far away. And yet – the problems started in kindergarten, the parents of the other children wrote statements to the Board of education, asking to remove Pavlik from the group, because supposedly it is dangerous to others. Head helped translate Pavlik to kindergarten for children with hearing problems, which then began. Two years later, Pavlik hearing completely lost and out of the school asked to take.
Had to leave work: employers were not enthusiastic about regular hospital.
– Although the dismissal was on their own, it looks very ugly: employers four times he made a check of my hospital and interviewed the Concierge in the entrance, surveyed the nurses in a kindergarten, you think Pavlik so sick or I bought sick. They apparently thought I was “the werewolf in epaulets”. I have removed all allowances to the salary, decided to punish me by money because raising a sick child.
One cousin, seeing that, indeed, the child is difficult, offered to take Pavlik to a boarding school for five days. But makes this idea seemed incredible how his child is in boarding school? She was looking for an opportunity to save his son.
The drug appeared, but you will not have time
It turned out that the cure is developed abroad, and it was written off, using the same online translator with the manufacturer. Russian doctors said that it is not time that Pasha will not survive. But the drug appeared.
We ran to all geneticists, and said that in America in July 2006, a necessary preparation. “It is good, – told us – but you won’t make it because the baby is very heavy, and in our country no one will ever purchase this drug. For mucopolysaccharidosis 1-th and 6-th type medications already exist: for one type of five years to another type of seven years. And never in my life did not occur to you that it may be in Russia.” I thought it was nonsense – there is a child who needs medication, is a medicine that can help him. Why not buy?!
We started to correspond with manufacturers of drugs, with officials. Everyone really wanted to help.
Officials were told that if the medicine was registered in the country, of course, Pasha would receive it. Then I realized, it must be registered in the country.
The manufacturer explained that one child is of no interest to them, unfortunately, is not. Another thing, if there was a patient group that… Need to look for other children with this disease. Snezhana continued to operate. So in the program “Vremechko” aired a story about the Pasha with a request to respond all who personally knows children with the same disease. First responded to 7 families, then 11, then 50. Now there are almost 400 families across the country who have a child with mucopolysaccharidosis.
Daughter came home from school, fed, clothed, diapers
As a result, the drug was submitted for registration and got it.
Before its release in the country, it would take some time – it was necessary to settle formalities, to produce the user manual and packaging in the Russian language. The doctors knew that Pasha can these nine months to live. He was in very serious condition. We made a conclusion of the medical Board that Pasha needs treatment abroad, because in Russia there is no this drug due to technical problems. And the Ministry of health of the Russian Federation decided to send us to the beginning of the treatment three months in Germany.
But to fly was not so simple: in January, the three bears after a spinal fracture and surgery on it could not sit, and the trip was scheduled for March.
– Then I couldn’t take care of themselves, not that of the pashas to care. I was very supportive daughter, who then was in high school, she came home from school, fed us, clothed Pasha diapers, walked me to the bathroom because I couldn’t walk.
Pasha needed a babysitter to go to Germany, and it collected all the world, we were not able to do themselves. Then some more time it was necessary to prolong the flank treatment until the drug finally appeared in Russia, and I had to fly to Germany for this medication.
It is clear that alone it was impossible to pay. So, a huge number of strangers gave me a son. That is, we literally redeemed his life.
What you see is the living son is the biggest miracle
Since that first visit to Germany 10 years have passed, and Snezhana talks about it like it was yesterday. She was sure that in Germany, Pavlik will first be examined and only after that start treatment. Yes, she knew that people with such disease without treatment live six to eight years, and Pavlik in a month or eight. But here they are in Germany, treatment is nearby, something to fear.
But the doctors saw the condition of the child heavy.
– You did not spend the night in a hotel, and in the hospital, and tomorrow morning – dropper with the medicine you have no time told me the doctors. They looked strange when I said that there is time – we’re here for three months. In the morning when the drip stood, came to the psychologist and said I should not so rosy perceived reality. “What you now can see the living son is a great miracle,” she explained.
Pavlik began to drip from 14 March, 2 June, we went through Moscow, and in January already all of Moscow’s patients with this diagnosis received the dropper.
For me, the whole world has changed. Pavlik stopped the clock crying and screaming that he hurt. He began to smile, interested in life, to grow, began to talk and to gain vocabulary.
I had a clear, persistent confidence that black stripe in my life ended and began all happy, Sunny and impossibly perfect. And now it continues, as my son is alive.
To often see Pavlik, Snezana, work at home, how can the position of President of a charitable organization, because she has to go to various round tables, meetings, conferences, congresses, patient event. When Snezana’s not at home with my son is one of the two nannies.
– When I return from a trip, and Pavlik for example, I had not seen since last morning, I come to kiss him. And he looks at me in a condescending adolescent turns to the nurse and kisses her, so I know how to skip. It’s very touching and funny.
So many people willing to help
When I give up? Yes I have always been, and can not, no chance. Do you know the song: “Atlanta hold the sky on bent arms”? I couldn’t give up, because then it would be on my head the sky fell.
Yes, for all others Snezhana – an incurable optimist. Friends, including those in the family which there is a disabled child, come to her to get that optimism.
Even Snezhana long been convinced that she’s a strong person, all razrulit can handle it, all will make.
– Five days in cardiac intensive care are sobering. You understand that if you’re not, Pavlik will not be better. You understand that to help is great and good. And not only that you can care for someone to do something, but people also want something for you to do.
Remember when we divorced after 28 years of marriage, I called one of the mothers, whose child is our ward. “Alice, I really need your help. I need you to fly for three days without you can. Come quickly!” Come, and it turned out she won the trip to the Spa hotel for two and decided that she should go and me. But she knew, she tell me about it, I would not go, but to help – is another matter. In the end, for three wonderful days I had a wonderful relaxing time!
Atlanta may let go of the hand: nearby are so many people willing to help. We must learn to ask for and receive help.
“Why are you in the temple?” – the priest asked
Pavlik is a special child, the reaction of others is different.
To Snezhana and she lives in his home town, often have guests with special children, all singing songs around the campfire. Neighbors once wrote a complaint to the police: say, going suspicious people with strange children, no other sect, and the plot goes purple bear. The district had to tell, show the website and explain that the purple bear is the symbol of the organization “hunter syndrome”.
Misunderstanding Snezhana met not only from the neighbors.
– We have gathered with Pavlik in one of the nearby temples. Drove up, got out of the car, go through the Church yard. Almost at the entrance we were met by the priest. “Where are you going?” asks. “The Church”, surprised I say, because like well there’s nowhere else. “Why?” I looked at him carefully and said: “You know, I guess, really no need.” We turned around with the pashas and went back to the car, deciding that we will no longer go to this specific temple.
Do we have a lot of stories happened when Pavlik was thrown out of the temple. When he’s in a wheelchair, no questions for him, and when he’s on his feet, sure to fit, to make a comment: “Explain to the boy that it is not necessary to shout in the temple. Explain to the boy that it is not necessary to sing with the choir” and so on.
That is, if the person is in a wheelchair, he is given the right to be unhealthy. But if on your feet, it should behave “as expected”.
Mum needs to win the lawsuit no matter what she cook or plasterer
When Snezhana says on its activities to the President of the Interregional charitable public organization “hunter syndrome”, constantly uses the phrase “to win”. What court? The children began to heal.
I was sure that, as only together we will achieve what will appear in the legislation the term “rare diseases” that will be established the order of provision of treatment, to treat children will be without a trial. It’s all spelled out in the 323-m law, but still there are cases when parents come from the Federal center in your region, give local doctors appointment, those who agree, but after three months, six months, eight months, and do not begin to heal.
If you deny place for treatment, it is necessary to go to court. There is no other way.
But we have unfortunate experience in this area. Three years ago in the Republic of Tatarstan we won the trial and written decision that the region should provide therapy to the patient 21. But they are not provided treatment, and the bailiffs fined the local Ministry of health on five thousand rubles. But it is still cheaper than buying a therapy.
We are helping children with mucopolysaccharidosis, and we have increased those moms, you can rely on in the regions. I have a principled position, not I come to win, but my mother does. When we start with that, Mama understands that it is her responsibility, no matter who she is – a painter, plasterer, cook, anyone. And she has understanding that she has made the treatment, it is valuable. And then, can it be other moms in the region to tell how the path she was walking, to support.
And then behind her not only her experience, but also experience all the other moms. Do you know how great that we all have each other. We have family from Ulyanovsk to Sverdlovsk oblast go on holiday, from Taganrog, for example, in Krasnodar. They Strugavets at our events, in hospital lie all together, agree.
Pictures to send their children to the sea
Snezhana is a man of action. If you have some unresolved issue, it should be solved. Not long ago, the three bears began to paint in oils, and she’s not too bad.
– Come to the beautiful Studio where I go, there all teach! In life in General – so interesting. We can with other moms to arrange a tour “In the purple” or go to the theatre. We organize picnics, master classes on crafts: making flowers, beads, dolls. You can put the kids to bed and play the same Board games, sit around the campfire, sing songs. This is a vacation that charges.
His paintings Snezhana plans to sell at a charity auction to have the opportunity to submit another change in children with mucopolysaccharidosis at sea.
All I say for what to try you, as Pasha did not go to the sea. The Pasha light a wedge has not converged, Pasha has a good thing here. And to those families who have children with mucopolysaccharidosis, for example, the third type, until a cure is invented, and a trip to the sea with the same families, with volunteers, with psychologists they will come in handy. I need somewhere to draw power while waiting for cures.
In General, good people I am lucky. Friends we have – not only parents of children with mucopolysaccharidosis, but, for example, my classmate, Pavlushina godmother.
People are not divided into those who have children with disabilities and who do not have children with disabilities. There are just people, and there is someone else in human form.
We often come across first.