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Rare diseases

23 years since his mother’s death, Sean Hepburn Ferrer shares her legacy of hope

Sean Hepburn Ferrer
Sean Hepburn Ferrer

She was a movie star adored by millions, but when Audrey Hepburn lost her life to a rare form of cancer in 1993 her family’s experience, like many others’, was characterised by frustration and loneliness.

“She simply looked out of the window and said ‘how disappointing,’” says Sean Hepburn Ferrer, Audrey’s eldest son, as he recalls breaking the news to his mother that her condition was incurable. The grace with which Audrey dealt with the news was typical of the icon who has come to epitomise elegance and grace.

As a Patron for the Pseudomyxoma Survivor Charity and Ambassador for European Organisation for Rare Disease (EURORDIS), Sean now spends time out of his life shining a light on the condition that took his beloved mother. “I’m neither an expert nor a celebrity,” Sean jokes. “But I’m a son and will travel and I have a story to tell. I hope that story will show people there’s hope; both scientific and personal .”

Loneliness of diagnosis

Audrey was diagnosed with pseudomyxoma peritonei, a rare form of cancer that affects just one in every million people each year, shortly after she returned from Somalia, one of her many charitable visits. When she experienced abdominal pain, cancer certainly wasn’t the first consideration.

Like many patients, Audrey endured countless referrals and inconclusive investigations before a diagnosis was eventually given after a first surgery. So little was known about the disease, which spreads via mucinous cancerous cells, that options for treatment were limited to chemos that had been developed in the sixties. Two surgeries later, the family discovered that the cancer had spread too widely and nothing more could be done.

“The loneliness we felt was crushing,” recalls Sean. “I remember I’d spend the mornings with my mother and then I’d return to the office and pour through the Internet, or what we knew as the Internet back then, to find anything. I spoke to so many doctors on the phone trying desperately to find any alternative options.”

sean and audrey hepburn

Impact on a family

Sean’s personal battle has given him great empathy for other families whose lives have been consumed by rare disease. While just one person may display the physical symptoms, the whole family feels the pain. Life becomes so focused around the disease that everything appears to operate in what Sean refers to as a ‘time warp.

When nothing more could be done in terms of treatment, Audrey and her family decided to go home to Switzerland where they spent her last Christmas together. Whilst this period is tinged with bittersweet memories, Sean is grateful for the precious time he had to spend with his mother. He is adamant that no matter who you are, where you live or what contacts and connections you have, “everyone deserves to know that they’re not alone.”

Future full of possibility

In the 23 years since Audrey’s death a great deal has changed. The notion of ‘Big Data’ has started to trickle into public consciousness as technology has made it possible to weave together the tapestry of information that has been collated over the past few decades. “Technology has enabled us to unwind the coil of DNA and now the possibility of more personalised treatment is very real,” continues Sean. “Even in regular cancer treatments we no longer consider just the disease, but the person, their biological make up, their genetics and their environment.”

Through his work with charities and health care groups across Europe and in the US, Sean has seen applications of this approach benefit not just those suffering with rare disease, but disease in general. But behind all the science, the technology and the medical advances, he stresses the importance of humanity.

When Audrey died in January 1993, aged just 63, the family gained great comfort from knowing she was in a place she loved, surrounded by the people she adored most in the world. “We realised that life isn’t about longevity, because no life is ever long enough to satisfy our hopes and dreams, it’s also about quality,” concludes Sean. “Like an opera, sometimes the most beautiful moments are at the end.”

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