Living on the street with Huntington's

Today's "life stories" brings us to a very difficult and sad place, but one that unfortunately exists. Many people with Huntington's end up abandoned on the street. Whether left by their families or due to psychiatric issues that arise from the disease itself, young HD affected persons sometimes end up living on the streets. The combination of abandonment, poverty and disease, when mixed with crime, can have devastating consequences. Recently, I received a call from Sonia Moreno from Medellin. She was crying. She mentioned that she was contacted by one of the Caritas centers in Medellin because they had found one HD patient who had been severely beaten on the streets. Lets call him "G". He had been missing for 3 years, and was in really bad shape. She asked to see if Factor-H could help pay for clothes and gifts. Sonia had seen him grow up as a child, and now she had to see him in such a condition. She cried of sadness and frustration, and kept repeating she would not allow for him to go back to living on the streets. He won't.

G's mother died of HD when she was 48. After she died, one of her sons went to live with an uncle, and G went to live with his dad. His life was hard, and G started using drugs and had no medical care. When his brother started getting sick, he too went to live with G and their dad. G's father died in violent circumstances and therefore both kids ended up without any parental support. G's brother ended up on the street at age 21, although he finally was moved to a care center, where he is still there today.

G has spent more or less 15 years living on and off on the streets, several of them with Huntington's. He is now 29, and since Sonia went to see him in the hospital, she found a municipal care center for him to be taken care of.  Right now he is getting medical assistance, good nutrition, and therapy. Sonia visits him periodically.

Her cries of frustration and sadness have a lot to do with the fact that she saw G grow up, his mother die, and his life becoming unsufferable, but they are also a desperate scream about how we, as societies, treat those most in need. No one should die on the streets, least of all a young person suffering from Huntington's.

G represents the untold stories of many young people affected by HD. Ignored by society and victims of the ravaging effects of HD in families. We can't stand in silence and let them die in abandonment and neglect. We can and will do better.

Dilia

Dilia Oviedo Oviedo is 79 years old.  She had 12 children. One was stillborn. Of the 11 children that survived to adulthood, 4 already died from Huntington's disease. 4 more are currently sick with HD, 2 in late manifest disease. Her husband died in the early 90s, and now a future generation is beginning to show the symptoms. One of her grandchildren already died of HD. She has 27 more, most of them at risk. Two of her great grandchildren are part of our sponsorship program (Project 'Abrazos', see kids' project tab)... the disease spreads throughout families in rural areas where the lack of support and frank ignorance about the disease perpetuates a cycle of disease, fear and poverty. Women particularly need to be educated of their options and rights so that they can make informed reproductive choices.

Dilia is a remarkable woman. I first met her in 2013, and hers was one of the first large Latin American families I ever visited. She lives with two of the kids (Maribel appears in the pictures with her, and she came with us to the Vatican and met Pope Francis) and several grandkids, in a family compound in the outskirts of a small town called "El Dificil", in Northern Colombia (Magdalena State). As each kid got progressively sick, they all moved in with her. Most of the women were abandoned by their husbands, and they relocated to be under Dilia's care. She has plenty of experience caring for HD patients, although it is becoming very hard for her to manage. They are very poor, and receive no government support. She lacks access to fresh water. The electrical service does not always work, and access to food is also scarce.

When I first met them, 2 other of her children were sick. They had died since then. Dilia was reserved, even though she was used to some people coming to see her family, she was very guarded. Maribel, her daughter, even more. Their eyes were sad, they did not engage much, and would not look at you directly in the eye. Their faces were marked with years of struggle, fear, anger and frustration. I have now become friends with them. The trip to Rome this last May was a remarkable experience, and I saw both Dilia and Maribel transformed. They were glowing. Dilia in particular became sort of a movie star during the trip. Her elegance and poise were incredible. Everyone loved her and wanted to meet her.

That Dilia- filled with grace, elegance, pride, hope and laughter, is the person we hope to make each Huntington patient into. Maribel changed as well... or maybe she did not change, maybe she became who she has always been before, happy, talkative, affectionate, proud.

I don't think I have ever seen first-hand a more beautiful transformation for two people: Maribel and Dilia. Having met the Pope was a transformative event for her. I kind of think of this trip as a Thank You to her for all that she has done to care for her entire family in spite of the difficulties. She has given all of us a lesson in perseverance, love, and humility. She never complains about her life - she simply focuses on doing the best she can for her kids, and her main concern is what she can do to care better for them. Get them food, get them diapers, get them to be more comfortable. We should all learn from her.

If you want to see a video of Dilia and Maribel, click HERE.

Roberto

Huntington’s disease

I met Roberto and his family when I visited them in April in Juan de Acosta, in the Atlántico State of the Colombian Caribbean coast. Juan de Acosta was considered the second largest HD cluster in the world, although many affected families have left the town in the recent years.

We visited his family as part of a trip to document the lives of Colombian families suffering from Huntington’s disease. At this time, the Guardian journalist Dara Mohammadi accompanied me in a two-week trip through various communities in Colombia. An article was published at the Standard (the Sunday edition of The Guardian) after the trip (you can find the link here)

Roberto used to work picking stones from the river next to his house. A house that gets flooded every year because that same river overflows during the rainy period. Many Colombian towns and cities have been expanding with little urban planning. The differences between the rainy and dry seasons lead to frequent floods. For impoverished people, this is disastrous as they can easily lose everything in one flood. When one combines this with the fact that patients have difficulties walking (and eventually can’t be mobile at all), one can see the gravity of the situation. Roberto came to hear us at the local hospital earlier in the day. I sat next to him during the entire morning. He has early stage HD, without much chorea but with facial dystonia and has difficulties walking. He speaks little, but smiles often. He is a very handsome man, dark skin and hair, gentle face. He reminded our friend Dara (the Guardian journalist) of a young Bob Marley with short hair. He smiled when he was told and said that people had mentioned this to him before too. His wife and his two at-risk kids (ages 16 and 13) allowed us to take family photographs in front of their house, next to the river that floods and threatens their home and their livelihood. Initially they were serious and nervous. They are not used to being watched and photographed. I told them that they should smile, that they were a wonderfully handsome family. They did. And the portraits were beautiful and inspiring.