Life-Changing Medical Treatment for Sarah ❤️‍

Sarah spent her life helping others before a rare genetic illness left her trapped in her own body, bedridden, in immense pain, and needing 24x7 care for 10 long years. But now she's found a cutting-edge procedure that could change her life! Please support Sarah by donating today. Fight for Sarah like she has fought for others. Read on for Sarah’s full story and photos…

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We're all surrounded by stories of modern-day heroism – triumph over injustice, transformation through adversity, and just plain saving the world. But imagine you were just a regular person, going to work every day trying to fight for those who couldn’t fight for themselves, and one day you woke up trapped in your own body?

This is the nightmare our friend Sarah began living 10 years ago, and what happened to Sarah could happen to any of us.

Sarah shared with us a little of what it feels like: “I have multiple panic attacks every day because my mind feels trapped inside my body. I feel burning pain everywhere, even my face and tongue, like my skin is on fire – it's so intense it makes me nauseous. There’s so much I still want to do, people I want to help, but I felt utterly helpless. The pain, fear, and uncertainty are constant.”

If you don't know Sarah directly, let us tell you a little about this extraordinary, driven, and compassionate human being and how this medivac flight will help her get back out into the world doing what she does best – helping people.

The passionate human rights lawyer

There's one resounding response from those who know Sarah to the question of whether they thought she'd end up a human rights lawyer: "It was inevitable, it's just who she is". As the grandchild of World War II refugees who started from scratch in Australia without speaking a word of English, a sense of equality, justice, and fighting for the underdog became part of Sarah’s DNA.

That passion carried through as she worked in companies, consulting, at the United Nations, and in the field, tackling some of the most egregious human rights violations including modern slavery, human trafficking, child labor, and the rights of Indigenous Peoples impacted by corporate projects. Her roles took her across the globe from corporate boardrooms, to factories in Bangladesh and rural China, and to gold mines in the Porgera highlands of Papua New Guinea, helping give a voice to exploited factory workers and survivors of sexual assault. Amidst all this, Sarah still made time to inspire the next generation of human rights idealists through teaching, lecturing at Harvard, Columbia, NYU and Fordham universities, and Lausanne Business School, Switzerland.

The sudden onset of Sarah’s physical health battle

But while Sarah’s mind was working overtime to defend human rights, her body’s genetic coding was silently unraveling. In 2014, after routine surgeries, her body finally gave up, and that silent genetic coding – Ehlers Danlos Syndrome (EDS) – turned her life upside down.

Sarah has been in immense pain, bedridden, and requiring 24x7 care ever since – 10 long years – and has been diagnosed with multiple other conditions that compound her EDS including Complex Regional Pain Syndrome, and Mast Cell Activation Syndrome. Her doctors struggle to control her pain even slightly.

Sarah's days are spent confined to lying flat in bed, staring at a computer screen projected onto the ceiling. As testimony to both Sarah’s ferocious spirit and incredible intellectual talent, from 2019-2022 she still managed to use this limited setup to complete a Masters Degree in her beloved fields of human rights and sustainability from her bed, was awarded the Dean’s Research Prize, and was able to get to Harvard in 2022 with the help of her wheelchair and crutches to collect her diploma.

And because she was stubbornly determined not to stop fighting for others, she also continued to give guest lectures via Zoom, co-authored two world-first publications on respecting human rights in renewable energy projects (below), wrote an OpEd to mark International Day of the World's Indigenous Peoples, served as a Senior Fellow at the Columbia Center on Sustainable Investment, set up her own company, Cosilience, and took on human rights projects from home.

While this was a high point in Sarah’s physical recovery, another setback in June 2022 left her in even more excruciating pain, unable to chew, only able to take in food through a straw, and dealing with rapid weight loss. Sarah’s hospital stays have increased in frequency since this time, but despite numerous specialists and various experimental treatments, nothing has worked, and she just continues to get weaker.

A ray of hope!

It has been extremely difficult for us, as her friends, to see our once strong, positive, self-assured, and incredibly capable friend, who has always been a pillar of strength for others, suffer so terribly and struggle to even exist without extreme pain.

BUT…now there is a ray of hope! Earlier in 2024, Sarah was made aware of a promising new cutting-edge procedure that targets the root cause of her pain – her connective tissue – performed by a global expert in California. However, because of Sarah’s weakness and inability to sit up, the only way she can get there is via two-way Air Ambulance stretcher flight from New York to Los Angeles and back. Neither the flights nor the treatment are covered by her medical insurance and are more than Sarah or her family can afford.

The updated cost breakdown as at December 2024 is:

Your support has already flown Sarah to LA and provided 3 months of this life changing treatment which is already showing gradual, tangible improvement in her connective tissue that is allowing her to start moving again with gentle physical therapy and strengthening exercises. After 10 years of nothing working, this is beyond expectations! To be able to continue this treatment (another 3 months is needed), as well as get home to NY, Sarah needs to continue to raise funds.

How you can help

This is a story that hasn't ended; it's still evolving and it could have a happy ending if we all play a part. If you can spare any amount, big or small, to support getting this incredible person back out in the world, we would be beyond grateful. Please share this link with others to spread the word!

Team Sarah