Palliative Care & Cerebral Palsy – Nadia’s Story

Please consider supporting the important work of the Russian Children’s Palliative Care Foundation www.rcpcf.ru

In Moscow, Russia we meet Svetlana Selyukova, Nadia’s Sister “I think we have a regular sisterly relationship. She is annoying, I am annoying. So of course we have conflicts, like everybody else.” She tells us, “we live normally, you know. She’s naughty, but I think that runs in the family. She is very calm, especially if you compare her to other children, she listens and really loves to educate herself.”

Nadia is asked about her big collection of CD’s and she tells us what she likes to listen to, “fairytales and music. I like choir practice and I like going to school, attending singing practice.”

We meet Nadia’s mother Mariya. She tells us about her daughter Nadia who has be diagnosed with cerebral palsy and 5th degree retinopathy.

Svetlana tells us “I think she’s slightly different, I mean people with cerebral palsy can’t move much anyway, it’s not a full paralysis. It’s mostly just trouble walking, in most cases it does not affect brain function, they can develop normally, go to school, university, have a job. It’s a condition that normally only effects large motor skills.”

Mariya tells us that Nadia was diagnosed when she was one year and two months old and that prior to that they weren’t told anything, “they could not tell us it was cerebral palsy. However they eye diagnosis came early at around eight months old. We were told she is blind.”

“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. We clearly had to make a decision. After three trips to the hospital we took her home, she was four months old. I could see that my husband was scared.”

Dr Natalia Savva, Head of Pediatric Palliative Care Centre, Moscow. “Society does not help a family that has a disabled child but rather distances itself from it.”

We learn through out the film how Nadia’s family have learned to cope with her condition, the complications of managing a health child and a child with cerebral palsy. Svetlana explains her concerns for managing Nadia as her mother gets older. With the support of the Palliative Care Foundation they receive some respite and we learn about how they have been able to support they family in different ways including psychological, medical, spiritual and social services.

Featuring:
– Nadia Selyukova
– Svetlana Selyukova
– Mariya Selyukova
– Olga Zakernichnaya
– Dr Natalia Savva
– Dr Diana Nevzorova

 

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