- I was running-running-running, - Ilya reads a poem by heart. Each “running” begins a bit higher than the preceding one. While Ilya is talking he looks somewhere upwards, his dreamy gaze detached from reality. With each new “running” Ilya takes off the ground more and more.
- Then I grew tired, - the fall after the take off. Ilya lets out a breath. Then the flight starts anew:
- Why am I not flying? Ah, what a pity!
Here Ilya makes a long pause.
- Is it the end, Ilya? - I ask.
- No, no, I wanted... I just lost my track of thought and can't remember what comes next now, - says Ilya sadly.
Ilya is a boy with primary immunodeficiency. The only defence mechanism has failed and thus made Ilya vulnerable to harmful viruses and infections. Ilya's story is also an interrupted flight, which the boy tries to continue all the time, no matter what.
When Ilya was 11 moths old he got meningoencephalitis: one day he was running and the next he couldn't even sit up – just fell on his side. That time Ilya managed to recover, but it was only moths later that he lost everything and had to start learning how to sit and walk yet again. One-year-old Ilya arrived at RCCH (Russian Children's Clinical Hospital) as a 'rag', as his mother tells me. But the boy managed to overcome the illness, stopped being a 'rag', took to the air once more. It was his spinal cord, however, that couldn't recover: meningoencephalitis affected the development of the skeleton and the musculature, and as a result, the hip joint became crooked, one leg 'went' to the side and the spine became deformed. Ilya regains the flight nonetheless, because boys like him live only when flying.
To fly means to take off the ground and go beyond the unknown.
- Fear, fear is something I haven't discovered in myself yet, - ponders Ilya. He pensively moves his gaze from one object to another, deep in thought. - I believe that every person lives and discovers things about themselves, just as I do, but fear is the part of me I don't know yet.
One second ago Ilya was telling me about his favourite playground, his voice ringing high, and now I have to strain my ears to hear him speak. The boy is always somewhere beyond reach: his voice, eyes and thoughts higher than we can imagine.
To fly is to shatter the unknown with knowledge. Ilya told me that he wants to become a palaeontologist because in palaeontology there are many questions that the scientists haven't answered yet.
- I want to discover something new, even if a little bit, to have a say. - Dreams Ilya.
To fly is to be the best, no matter what.
- At school I did more pull-ups than anyone! And today on the exercise machines... And there was a competition, I almost won. - Ilya can go on for ages.
To fly means the whole life Ilya has ahead of him. The illness will be interrupting his flight, but Ilya will be continuing it nonetheless. But at times he will need something to help him take to the sky. Something like orthopaedic shoes. Ilya is growing up and free orthopaedic shoes do not suit the young poetic boy, because they will constantly remind him that he is different from others. We purchase three pairs of special shoes for Ilya, so that the boy can continue striving for the best and so that he will not have to interrupt his flight ever again.