Film Review: ‘The Zebra and the Bear’ – A Story of Love, Loss and Unrelenting Resolve.

“Anyone with kids will tell you, they change your life.” These are the first words you hear as ‘The Zebra and the Bear‘ begins. These are the words of Ambar Olsen, the mother who is described as ‘the bear‘ in this documentary. The calm and ache with which she says these words reflects that of some who know just how true they are, and this sets the tone for the film.

Directed by Patrick O’Connor and filmed over seven years, ‘THE ZEBRA AND THE BEAR‘ chronicles a story that begins with heartbreak and unfolds into something far larger than any one family’s struggle. At the centre of it all is Ambar‘s youngest daughter, Willow, who was born in 2013. Their family’s world is shattered when, at just two years old, Willow is diagnosed with an ultra-rare and fatal genetic disease called Multiple Sulfatase Deficiency (MSD). An incurable disorder that is so rare that only a few doctors know much about it. The film refers to little Willow as ‘the Zebra‘ because of the rarity of her condition.

Amber describes the moment of finding out about Willow’s condition as being like “standing in the middle of a tornado.” What they initially thought to be just developmental delays turned out to be something grave that would truly change their lives as a family. Willow, who had already started running around, was losing all the motor skills she had already acquired. A kind of developmental regression that can’t be reversed.

The film gently and honestly captures how parental love is unwavering and can push people beyond what they thought was humanly possible. Amber goes from knowing nothing about genetic diseases to navigating medical literature, negotiating with scientists, fundraising millions, and even lobbying research institutions, all in the quest to find a cure for her daughter. She learns about other parents and children who are dealing with similar genetic ailments and how challenging it has been for them. She never imagined a life for herself where should would be interested in paying for rats to be used for drug trials.

But her resolve and resilience are what make this film extraordinary. She is truly a mama bear willing to go to any extent to ensure that her child survives this. Amber and her husband Tom eventually separated and divorced after years of struggling to find this miracle cure. They both refuse to blame Willow’s condition as the cause for their marriage failing. But it is obvious that Ambar’s persistence and continued fight certainly put a strain on their marriage. She even acknowledges how it all might have affected her two older children. But both she and Tom remained unwavering in their mission to find a cure for their daughter, even after divorcing. In the film, they both talk about her they had to make adjustments and arrangements to still accommodate Willow’s deteriorating condition, even though they are no longer together. They parent with mutual respect and a shared determination to give their daughter to best of life possible.

As a father to an almost 3-year-old daughter myself, this film hit me hard in several ways. I found myself wondering if I would have the resolve to do what Amber did. Could I face each day, knowing what the future likely holds for my child? I can’t imagine this as a life for anyone.

One of the film’s most heartbreaking arcs is the realisation that by the time clinical trials began to gain traction, thanks largely to Amber’s persistence, Willow’s condition had already progressed too far. The miraculous gene therapy she helped bring closer to reality would come too late to save her. And yet, Amber does not wallow in what was lost.

Because of Willow and her mother’s efforts, MSD is now part of a breakthrough pilot program at the National Institute of Health. There is now hope for families who might one day be in the same situation.

‘The Zebra And The Bear‘ is a moving and honest documentary. It’s a film that advocates for more research and funding into gene therapy that can help save many lives. It uses Willow and Amabar, the zebra and the bear, to remind us all of what it means to show up every day for someone you love, even in the face of despair.

I will score this documentary film 4 out of 5 stars.