October 25 – a day of global awareness about spina bifida (spina bifida). Inna Inyushkina heads the charity Fund “step”, which works on programs for building a system of care for children with spina bifida. Fund – two years, but history began early, when she was diagnosed with her own son…
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The child pathology: spina bifida, – said the doctor frightening and then absolutely incomprehensible to Inna Ilyushkinoy words. Was 33-weeks pregnant, and she’s going to have the baby in Italy, just came in for an ultrasound to show the data in the plane…
– I first heard this phrase, – says ina. – Opened the Internet and came across absolutely terrible stories with scary pictures. No parent community, Fund and others – not to learn from real people what is the diagnosis and how to cope with it other parents.
Inna. Photo: Alexander Filippov
Make the diagnosis Inna helped the immersion into the story. She read and watched movies about the Second world war, the Holocaust…
– It is clear that situation back then were much worse, hopeless than me. I’m not a Jew in the occupied territory during world war II… I – it’s okay, I live in Moscow, in the twenty-first century, I have a husband, have friends and acquaintances. I had to get up, pull myself together and move on.
The doctors hinted that the child is palliative and you just have to wait
It was in 2012. In Italy Inna have not travelled, have agreed to a Moscow hospital, but after some time they refused to do a caesarean section, had to look for another hospital.
– Today this problem remains with the hospitals, – says Inna. – Because the birth children diagnosed with spina bifida spoil statistics, and the more there is a likelihood of mortality of a child. Our Fund helped a young woman from the Khabarovsk territory, which did not take a single hospital and we were transported to St. Petersburg just so she bore.
After birth, the child was sent to the Department of neurosurgery and to obtain comprehensive information about what to her child, she could not.
– Full of comprehensive information is not available now. That is, for example, parents not talking about problems urological, orthopaedic, which can occur in a child with this diagnosis. Remember the terrible story of how, after two successful neurosurgical operations month-old baby was sent home in a distant region, and he died there from kidney failure. None of the experts warned that on arrival home you should first go to the urologist, to test urine…
Matthew, son of Inna, the first operation in the first days of life make all children with this diagnosis, in Moscow, the conduct did not – they were too big to pathology. Doctors have even hinted that the child is palliative and you just have to wait…
Realizing that to save his son of the need, she turned to an Israeli hospital. To raise money for the surgery, first began to apply to different funds. Then not knowing the specifics of charities, she called and wrote in everything and always got rejected: each Fund has its own specifics, and Fund for children with spina bifida, did not exist.
Inna son. Photo from personal archive
Inna described her story a short post on social networks, through friends in six days has collected the necessary sum and son flew to Israel.
It was my first, and successful, experience of fundraising, says Inna.
Child of Israel was saved, making the operation extra. Then it was back.
Inna quickly accepted that she had a child with this defeat and it will not run, and then you need to learn to live with the original data.
A year and a half Matthew bought the first wheelchair two years he began to attend kindergarten. He is now six and a half years, he enjoys traveling, swimming and chess. The same child, as well as other peers, only moves with a wheelchair.
Photo: Dan Novak
The objective of the Fund, including to tell the mothers that these children can live normal, ordinary lives. Mom can work, not to forget their Hobbies. Child can visit a kindergarten, school, to have friends. Because very often we are faced with the fact that children are not given in kindergartens, is not given to the school, leaving home-based education. The result is a sad situation when the mother from morning till evening sitting at home with the child the wheelchair who talks to nobody, not socializarea.
It is very important to accept the situation. The first years mothers think: now I will press on, go to the doctors and “experts” of alternative medicine and it will jerk, I will put on my feet.
Now, when I’m working at the Foundation, I know that there is a certain level of defeat. One child will walk with the help of special devices, while the other – in the office, and if you lose more, the child will never be able to walk, what do you do. Of course, this information is necessary to provide moms. Me in the four years that I was just a mom, this information does not provide. I provided it only as a Director.
Because the experts of the Fund in the first visit to the wards to tell mothers about the child, about his perspectives on how to examine, what to do and not to do.
Once the boy lived in the home for children with disabilities, and now he’s in a big family
Inna Inyushkina, except that the head of the Fund, also a co-founder and head of Montessori school “Earthlings”. She created her when Matthew was born, then he did not study hard in secondary school. The project successfully developed, Matthew went to kindergarten, and she always remembered those moms with kids who have the same diagnosis as her son.
– I saw them at the rehabilitation center, for example. Often it is the mother of regions, which left the men, leaving with the sick child, women with extinct eyes, with bowed head from the feelings of hopelessness. So I wanted to help them, to support!
And now, two and a half years ago, we started our Fund. The first time mom took me seriously, that is like one of them as Director of the Foundation, I experienced a number of conflict situations.
Now we came to another much more professional level. We have an understanding of what kind of assistance we want to provide what system of the program we want to run.
Today the Fund has more than 500 wards, in addition, children with spina bifida who are in orphanages.
The Foundation of their survey, if required – the operation is conducted, and then these children the Foundation helps to find parents.
With one of these former inhabitants of the orphanage Inna was found when he was laying with his son in the hospital. Once the boy lived in the home for disabled children and he had psikhonevrologicheskiy internat. He now lives in a large family, together with the Pope he expected the necessary operations. After recovery will continue to go to school. However, he developed late, but not because of the diagnosis, and because I grew up in a specialized orphanage.
The Fund helps, if necessary, to collect money for the operation or simply on a trip to Moscow, where the operation doctors are willing to be part of the OMS, helping to foster parents who took children with this diagnosis.
Inna. Photo: Alexander Filippov
– We try to work and address, helping a specific child, and doing system help, – says Inna. We have a lot of system projects. For example, we train the occupational therapists and physical therapists, and in November, after a year of training 40 professionals disperse throughout the country and can help children, including in orphanages in remote regions. Now we want to train teachers who train the normal children. We want to teach them that they were not afraid to include in their group of children with the pathology of spina bifida.
One of our projects aimed at the prevention of births of children with spina bifida. We are working with geneticists to understand the causes of pathology. In Russia this situation is not studied as methods of prevention.
In the UK newborns with severe pathology are almost there
Foreign research suggests that if you eat folic acid, the risk of disease is much lower. In the UK passed a law that all bread should be enriched with folic acid.
Generally in our country are diagnosed with spina bifida are still many unresolved problems. For example, fetal surgery does only mark A. Kurtser, and – at his own expense, for the wards free of charge. But it is not for all operations, it is necessary to look for options abroad and it’s a huge amount. In Russia there is no system intrauterine operations.
Such a system is developed, for example, in the UK, Switzerland, Italy. When the specialists of these countries come to Russia and see my son, they say that they have a long time ago to not have children with such strong losses. First, prevention, second is early diagnosis and the possibility of intrauterine operations. In the UK newborns with severe pathology are almost there.
Inna believes, to the problems of children who have spina bifida, must be approached comprehensively. Today with every issue need to go to different places. With urology – a clinic with orthopedic another, with the neurosurgical Department in the third. And they can be in different cities.
– To get to the clinic, you need to defend the place, sometimes several years. You need to collect a huge number of documents for each clinic. And it turns out just to examine a child, you need to spend at least a year, and it should be tested annually.
Currently only one private clinic in Moscow conducted a comprehensive survey in just three days. Free in our country, yet this is not.
The charitable program of the Spina Bifida Foundation “Take a step” is working on a program for conducting systematic assistance to children with spina bifida.