Arts Festival

Evil giants; hapless mermaids

HEARTBREAK loading: Olga (Darya Gantura), Sandra (Rosalie Charles) and William (Sven de Ridder) shortly after the diagnosis in Save Sandra. Photograph courtesy

HOW DO YOU tell your beautiful little six-year-old daughter that she faces a sheer cliff in terms of how the year ahead may look for her health? Little girls are supposed to be thinking about unicorns and mermaids, dragon slayers and princesses, not about whether their arms and legs will still move in a year’s time. Save Sandra is a gut-wrenching essay on the rare degenerative illness known as MLD (metachromatic leukodystrophy) and the complexity and politics around pharmaceutical giants in Europe. It is a David and Goliath story that will hold you rivetted with horror. Directed by Jan Verheven and Lien Willaert, it is available online and without cost, as part of the 8th European Film Festival South Africa, which runs from 14 until 24 October 2021. Bookings are open.

Magnificently filmed, this is a tightly drawn work which doesn’t stint on emotion. It’s based on the true story of Sandra Massart and her parents, and with immense empathy, tells of the impossible catch-22s weathered by this little family unit, where, as the disease ran rampant in the neurons of their only child, over the period of a year, so were the proverbial goal posts shifted under their watch. All the time.

Sandra’s diagnosis begins with a dragging foot. And it flows with a terrifying chronology through her body, robbing her first of her mobility, then her continence, her voice, then her sight. The prognosis is dire. Two years, max.

It’s a tale of crowd-funding going sour and one which, central to a social media world, sees hatred bloom in the place of unknowns in the story. It’s about how a parent can hold onto hope even in the face of others’ judgements and barbs. On a level, it offers as factual and complex an account of illness in the face of experimental giants, as George Miller’s 1992 film Lorenzo’s Oil does, but on another, it is a thoughtful reflection on how people do and say the absolutely wrong thing in the face of someone else’s catastrophe. Even though they mean well.

Beautifully performed by Sven de Ridder and Darya Gantura as Sandra’s parents, William and Olga, the performance of Rosalie Charles as Sandra, takes the film onto a higher plateau. Evoking the astonishing work of child actor Helena Zengel in the European Film Festival work System Crasher, in 2019, Charles plays the role of a little girl under the giant fist of a degenerative disease in a way that outrageously belies her own youth. This is a talent to watch out for.

Also, the production design of the work is astonishing. Playing with the quirkiness of tales told to children, it uses hand-made animation to convey a sense of safety in the unknown. It’s a context where a wheelchair is a magical transport for special princesses and a bird can speak to the little mermaid who has no voice because her illness has stolen it. Above all, it is about celebrating the thief of hearts, in ways that touches on whimsy but never lose its solemnity.

Save Sandra is a masterpiece of a work. It touches all the values of what a little girl is and should be, and conflates those with what an enormous illness can represent, but also how the lives of her ordinary family are thrown to the sharks of pharmaceutical double speak and political decision-making.

Save Sandra is directed by Jan Verheven and Lien Willaert and is performed by a cast headed by Rosalie Charles, Viviane de Muynck, Sven de Ridder, Darya Gantura, Peter Gorissen, Ini Massez and Elke van Mello. Written by Lien Willaert, it is produced by Peter Bouckaert and features creative input by Merlijn Snitker (music), Reinier van Brummelen (cinematography), Philippe Ravoet (editing) and Gunter Schmid and Ann Willems (casting). In Flemish, Dutch, French and Russian with English sub-titles, it is part of the 8th European Film Festival South Africa, screening online and without cost from 14-24 October 2021. Bookings are now open.

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