As our International activities proceed, reaching out to our volunteers all over the world to understand their local activities, critical aspects and goals for the future, we were recently contacted by a physician from Argentina in search of support. We met virtually with Dr. Pablo Lopez and the members of a local GBS patient support group, Fundación Luz Argentina. The conversation was friendly and heartbreaking, overwhelming and encouraging. We want to share the story of the making of this GBS support group with the personal story written by Adriana Condor.

“My name is Adriana Condori, mother of two children. On July 7, 2019, my 14-year-old daughter, Luz Camila, woke up with numbness in her calves. I thought it was muscle pain. During the afternoon she told me that she couldn’t move her legs so I called the local emergency service but unfortunately, they refused to transfer her to a Health Clinic. I then took her to a Public Hospital, but that night they couldn’t see her; in the meantime 8 hours had gone by from the initial state and she had become completely paralyzed. The situation got worse because they did not admit her into the hospital and they accused us of trying to draw attention, which was not the case; with the help of a nurse and a young doctor I took my daughter into the car.

Since I could not move her to get her to bed at home, that night we slept in the car, waiting for morning. Around 8 am I took her to the clinic that also rejected us for care. At that point I drove to the Children’s Hospital in the city. When they saw her condition, they urgently admitted Luz. At noon they told me it was Guillain Barré Syndrome. I had never heard of the disease, I just wanted my daughter to be saved. For 15 days I prayed to God to save her, to not take her away, but my prayers and supplications remained unanswered.

I want to believe that she did not suffer. I was left with an emptiness because they denied my daughter the right to be admitted into the hospital and receive a proper diagnosis and immediate care. I don’t know if she would still be here and in what condition if only she had been diagnosed in time.

At that point I went through many processes. I began to make myself heard by shouting out what I felt. I shouted out to a society that doesn’t speak up and is silent, that succumbs. The shouting helped me through my grief. When I was finally able to face the truth I began to study and understand what GBS was. I searched for information and I started a support group; in 2020 I set up the Fundación Luz Argentina in honor of my daughter, Luz Camila Liendro. In 2021 the foundation was approved,

On this path that I decided to take, I often meet people who seem to be sent into our lives for a purpose, like the members of the Fundación, Dr. Pablo Lopez and now the GBS|CIDP Foundation. Almost everything we make or receive seems to be destined to this path, in abundance and with love. That is how I feel. We want to save lives, raise awareness and shout that GBS exists, like so many other conditions, and that it could be deadly.

We have a history of struggle in our country’s health system. Our goals are many, God willing they will be fulfilled with the blessing to achieve them. I want to set up a health facility just for GBS with everything a patient needs for their recovery.

At the moment we are distributing posters and brochures at local doctor’s offices and hospitals.  We carry out dissemination tasks through different events, organizing campaigns with other organizations. “Fundación Luz” is my life, she is my daughter and I will take care of her until I can.”