Ice and
Space

Summer holidays, all schoolchildren are gone — some went to summer camps, others are travelling with their parents, and only children in wheelchairs stayed home to contemplate ceilings in their rooms. It may be difficult to travel with such children, but it is quite possible, at least with the help of charities. If a child has a dream, this dream must come true, especially if this child has stayed almost all his life in wheelchair. And it does not matter, what he/she wants — to explore outer space or to visit lake Baykal.
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I Ice

When Dima was in orphanage he had three dreams: to travel by train, to lay on the floor and to see stars. Dima has SMA, spinal muscular atrophy, his muscles are really weak, they practically do not work and do not evolve, he can not walk, and it is hard for him to breathe and chew. A year ago, when Dima was nine years old and had already lived in three orphanages, Tanya became his guardian. During this year he has not only seen stars, but also has lain — not only on the floor, but on ice of the biggest lake on Earth; has not only travelled by train, but became an experienced traveller — he has already been to Bulgaria, Georgia and in Italian camp for children with SMA. One of his most memorable trips was to Baykal
Tanya, Dima’s foster mother carrying him from living-room to kitchen
In order to make Dima and his caregivers feel more comfortable, they were led in the airport by a special route specially designed for wheelchair users. In the photo Dima and Katya, nurse, accompanying him in his trip, taking elevator before boarding the plane
Sometimes Dima feels very hot, and then Tanya strips him to the waist. There were free seats in business-class on the plane, so Tanya and Dima asked flight attendants for permission to stay there for a while. They agreed → Assistance at the airport
Natalya Syomina, board president of charity Zhyvy seychas holding Dima in her arms, while showing puppy farm in Listvyanka where dogs for dog sleds are raised
Dima at a guided tour in museum of Irkutsk aircraft factory
Tanya and Dima sliding down an ice slide in Teltsy
Tanya and Dima travel with non-invasive ventilation device. Every night Tanya puts it on Dima in order to help him breathe in his sleep.
Dima in his bed in the morning
Tanya brushing Dima’s teeth in their hotel room
Dima on a winter road over Baykal
Tanya and Dima on Baykal’s ice. Tanya is trying to hold Dima in a more comfortable way

II Spaces

Raduga — Omsk charity center that helps children was contacted this January by a grandmother who asked for help with her grandson with muscular dystrophy. Raduga people went to the town of Isylkul, where Nikita lives. They met the boy and found out that he had a dream: to go to space. Raduga decided to make this dream come true and to bring Nikita to Moscow planetarium
Nikita lying on the coach in his room. There are only two places in his room where he spends his day: he either sits at computer or lies in bed
Nikita’s grandfather turning him to the side in order to give rest to his back
Nikita suffers from muscular dystrophy; his muscles eventually loose their strength. He is 12 now and has not been able to walk for several years already, but he still remembers time when he could run around the streets
While sitting at computer’s desk, Nikita plays games, watches films and cartoons, and also studies. He often uses tablet instead of computer
Nikita on the coach in his room, waiting for his uncle to come and bring him to the airport
Liuba, Nikita’s mother, has the same illness as her son. But Liuba’s illness, unlike Nikita’s, is not progressing, that is why she can plan her life, as she understands her state. Unfortunately, Liuba was not able to visit Moscow planetarium together with Nikita
Valentina Vladimirovna, Nikita’s grandmother, preparing dinner before their departure for Moscow
Alexander, Nikita’s uncle, carrying him in his arms to the car
Nikita, Valentina Vladimirovna and Katya from charity centre «Raduga» in the bus to the aircraft which will get them to Moscow
Airport employees carrying Nikita into plane
Nikita and his grandmother in the hotel’s bathroom. They stayed in a special room for disabled people
Nikita’s grandmother using binoculars in Moscow planetarium
Nikita and Katya using special elevator in Moscow planetarium
Nikita looking at meteorites in foyer of Moscow planetarium
Nikita looking at the Moon’s model in foyer of Moscow planetarium
Nikita near the model of our Solar system in foyer of Moscow planetarium

How it made possible

Both these stories could not come true without charities support. Dima and Tanya’s trip was organized by charity Zhyvy seychas (Live now), Nikita’s visit to Moscow planetarium — by Omsk charity center Raduga (Rainbow).
It is hard to travel with child in wheelchair, but it is quite possible. You will spend more or less the same amount of money that is needed for travelling with healthy children. Charities provided us with some figures.
Getting ready for travel → Tickets → Assistance at the airport → Board and lodging → Transfer → Excursions → Problems → Main discovery

1Getting ready for travel

Dima It took Zhivy Seychas two days to find money for Baykal trip. Danko-Tours — a small agency from Irkutsk helped with hotels bookings and transfers.
Nikita Fundraising for Nikita’s trip to Moscow started on April 12, in Space exploration Day, and was completed at the beginning of June.
Preparations took about a week: it was necessary to get in touch with planetarium, to buy tickets, to find a suitable hotel and to plan itineraries with no underground passages on the way.

2Tickets.

78 000 rubles Price of plane tickets Moscow-Irkutsk-Moscow for Dima, Tanya and volunteer caregiver Katya was 78 thousand rubles. It was important to have a caregiver during this trip as Dima has NIV (non-invasive ventilation), and if something had happened to the device, it would have been almost impossible to find anyone who could fix it in Siberia. Besides NIV Dima travels with CaughAssist, nebulizer and wheelbench (19 kilos).
66 855 rubles Price of plane tickets Omsk-Moscow-Omsk for Nikita, his grandmother and a volunteer caregiver was 66 855 rubles. Liubov, Nikita’s mother also suffers from muscular dystrophy and has been bedridden for several years already, so it was his grandmother who travelled with Nikita.

← Back 3Assistance at the airport

If you book assistance in Domodedovo airport beforehand, you will be able to move smoothly everywhere. Tanya had some problems at Irkutsk airport though: she was asked to lay Dima down on two stools (he is not able to sit) and put a long wheelbench (19 kilos) into scanner. Tanya carried Dima in her arms in the plane.
Assistance was booked in both airports before and after flights, Nikita and his caregivers were brought to plane in a special car, they got help while boarding and getting out of the plane.

4Board and lodging.

50 270 rubles A week stay in hotels in Irkutsk and Listvyanka for three people — 50 270 rubles
19440 rubles Stay in Moscow in Design-hotel (D’Hotel) — 24 thousand rubles, but when they found out that Raduga is bringing a disabled boy, they made a big discount, provided one extra breakfast, and as a result three-day stay for three people cost 19440 rubles.

5Transfer

16 000 rubles Airport — Irkutsk -Listvyanka — Irkutsk -Teltsy — Irkutsk — airport: 16 thousand rubles. Irkutsk travel agency Danko-Tours organized transfer..
5104 rubles Airport — hotel — airport — taxis in Moscow — 5104 rubles.

6Excursions

36 000 rubles Amphibian boat Khivus (two rides on Baykal ice) — 36 thousand rubles. Besides Baykal, Dima had some more excursions for free. Sergey Rybak, press-secretary of United Aircraft Corporation, organized a tour to Irkutsk aircraft plant. Elena Vishnyakova, member of board of trustees of Zhivi Seychas, organized a tour to Irkutsk hydroelectric power station that was actually closed for renovation at that time but Dima and his caregivers were led on their private tour there.
free Moscow planetarium provided a free guided tour for a disabled boy. Nikita even had his own individual guide.
Main problem
(especially outside Moscow):
lack of barrier-free environment.
People who really care and try to help.

Команда

Фотографии и видео Сергей Карпов
Текст и редактура Наталья Морозова
Фоторедакторы Анастасия Сварцевич и Андрей Поликанов
Дизайнер Артем Зайцев
Вёрстка Дарья Логачева
Монтаж Маргарита Захарова
Звуковое оформление Елена Упорова
Переводчик Тамара Эйдельман

Благодарности

Команда проекта выражает благодарность в подготовке проекта Елене Вишняковой, омскому благотворительному центру помощи детям «Радуга», фонду «Живи сейчас», а также компании Rentaphoto за предоставленную технику для съёмок.
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