In the latest short film by Little Stars, we are introduced to an animated 18 year old girl, Nadia Selyukova, who hails from Moscow, Russia. She has cerebral palsy and 5th degree retinopathy. Her older sister, Svetlana Selyukova , describes their relationship as fairly normal saying, “I think we have a regular sisterly relationship. She is annoying, I am annoying. So of course we have conflicts, like everybody else. We live normally, you know. She’s naughty, but I think that runs in the family.” She describes her sister as a very calm soul, who listens and loves to educate herself.
Nadia is passionate about music and has a large CD collection. When asked what she likes to listen to, Nadia says “fairy tales and music. I like choir practice and I like going to school, attending singing practice.” Nadia shows off her singing skills by reciting a beautiful song about her mother, Mariya.
Mariya explains that Nadia was only diagnosed when she was one year and two months old, before that the doctors couldn’t tell them anything, “they could not tell us it was cerebral palsy. However the eye diagnosis came early. At around 8 months, we were told she is blind. Of course it was terrifying, we lived a normal life with little to worry about, when we got the news we couldn’t believe it, this was not for us, we had a healthy older child, it was very hard to come to terms with.” Mariya explains the difficulties she faced raising Nadia, and how Svetlana would often get jealous because of the time and attention Nadia received, “I can see she still has a deep hurt in her, I love them equally, they are both my children, but Nadia needs more attention, 24 hours a day.”
Dr Natalia Savva, who heads the Paediatric Palliative Care Centre in Moscow, explains “Society does not help a family that has a disabled child but rather distances itself from it.”
“Palliative care in Russia normally means medical help, relieving symptoms and solving medical problems,” says palliative care doctor, Dr Diana Nevzorova. “But palliative care is a much wider concept than that, it includes the entire family, not just the child,” she says.
Learn more about the Little Stars series of films and how you can pledge to hold a screening of the full length feature film when it is released later this year.
Please consider supporting the important work of the Russian Children’s Palliative Care Foundation.
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