The girl at the end of the world

A story by Alex Fisher

“In the small space that we have built so much on, it’s not just their genes but their everyday which is a moral laboratory, and the girl at the end of the world should remind us of that.”

Alex Fisher is an occupational therapist who has worked with HD patients most of her career, first in the UK and now working side by side with the Factor-H and Habitat LUZ team in Venezuela, helping the most destitute individuals afflicted with HD in Barranquitas, Venezuela.

Alex contacted me a few years ago after I gave a virtual talk about Factor-H work in Latin America; she wanted to help.

I hesitated at first – how would a British woman who did not speak Spanish and had never been to Latin America adapt to the extremely difficult conditions of Barranquitas, a town beset by poverty and violence?

But Alex’s voice speaks kindness and determination, and we met in Maracaibo so she could, for the first time, encounter the heartbreaking reality of the HD familes there.

Alex never looked back. More determined than ever, she focused on providing care for the most destitute patients, many of whom were living on the streets or abandoned by their relatives. Together we built a caregiver’s team and program solely focused on assisting those most in need. Alex manages a team of local women caregivers who visit patients weekly and help them with their medical and social needs.

Alex symbolizes the importance of never turning away someone who wants to help. Her contributions to our work have been many, but most of all, she has become a local and earned the trust of this castigated community. Always armed with a beautiful smile and a desire to make life better for our friends there, she manages to win hearts and minds.

Below you will read the first of several stories she has written about her incredible experience and the impact of her work in improving the lives of our friends, who often live in the darkest of obscurities. Re-reading this article, just published in the journal of Huntington’s disease (click to read the article) brought fresh tears in my eyes.

Little did I know when I started Factor-H that so many wonderful people would join us in our quest to restore hope and dignity for the patients of Latin America. Alex, in many ways, represents that which enables us to continue working despite very difficult circumstances – a true belief in the power of our humanity to change lives for the better, and a belief that, together, we can bring happiness and renewed hope, one person at a time.

A life gone too soon, but a life not forgotten or without meaning. She will be forever in our hearts and will continue to inspire all of us of the importance of “being there”. For kids like her and for all the patients who suffer from this devastating disease.

As another Factor-H local community member once said: “We need to turn our pain into light”…. together we can bring light into their lives.

Please join our mission to help them, and thank you for reading