Brittle bones, the heart of gold

Sorin Focuță. Some people know him as the man who suffers from Lobstein disease, an illness also called brittle bones. Even more people, though, know Sorin as a friend. He is unable to move, but from his soul and with the help of technology, Sorin shares the joy of being alive with all his dear ones. With all those who have become part of a wonderful story about dignity, love, and gratefulness. Because Sorin never wanted to live in other conditions, moreover, he was always thankful for his own.

Sorin was born 46 years ago in a neighborhood near Bacău. He was the fourth child, but he only met his 8 years older brother. The middle ones, a girl, and a boy died when they were little, being diagnosed with the same illness as his: Lobstein disease, a mutation that affects the production of collagen and drives to bone fractures.

The doctors didn’t give Sorin either too many chances of living, best case scenario he would have lived until his full age, so they proposed his mother to get an abortion. But she chose to keep him, and his life didn’t stop as they thought it would. And Sorin never wished it did, in spite all the hard times he has faced.

He managed to walk just for a while when he was one year old, but after two months he suffered a thigh bone fracture which left him unable to step anymore. He was a joyful child and there were a lot of moments when he dared to go out and play again, just after his bones were broke. They were fixing themselves as quickly as they were breaking, again and again, so a lot of them bent.

His mother took him often to the hospital until he was three years old and she finally understood that there was no cure for his illness. She decided that it’s better for him to stay home and she did her best to take care of him. Sorin was glad about her decision and he laughs when he remembers about his childhood, although it wasn’t quite easy. “I had this stroller from which I used to fall down, one of his wheels used to fall, so I was rolling over. My bones were broken, my mom used to come and pick me up, I was just like a puppet, with my bones clattering. I was in my room for two weeks, crying, but when the pain was over, I could instantly smile again”, Sorin says.

He really enjoyed the time he had with his family and he took advantage to shape his mind and his soul. He learned to read using some letters cut from magazines because he was unable to go to school and he never really saw one. But he didn’t let that get him down, he did a great job learning by himself. He was always surrounded by books and he was frequently outside in the neighborhood, playing with the children whom would invent ways to make him part of their games and to learn together.

Also, Sorin got a friend in his bigger brother with whom he did all kind of pranks when their parents were missing, like playing football on the board that was used to make the guests table bigger. Sorin was using his hands and different objects to make the game funnier, also he was passionate about chess and when the games were over he used to sew. “I was looking at my mother, how she was sewing all kind of models, and I wanted to do the same. I used to knit smaller crochees, my left hand was harder to use, it bent faster than the right one, so I was holding the crochee within the fingers of my left foot and I was knitting with my right hand. I even made a dress for a doll once, my mom was receiving orders for tailoring and I did everything she did or my brother did. I solve rebus, I played rummy, backgammon, cards, I did all kind of stuff”, Sorin says.

In his adolescence, though, was the last time when he could use his hands and sit. In the image below he’s next to his brother, his parents, and his godfather.

A fracture at his right arm when Sorin was 16 years old left him unable to move very much, he stood in bed so hix bone could get fixed, but he couldn’t move his back got stuck and it’s been 30 year since he remained there, with his arms open.

Short after Sorin broke his arm, his father died in a work accident, he was a builder in civil engineering. Sorin’s mother struggled to raise her boys and to get a disability support pension for Sorin, they had financial issues. Until then, Sorin father’s was the one to bring food home to his family, but with God’s help and with help from some people, as Sorin says, life went on. And he learned to occupy his time in another way and even to help others, it was his turn now.

He received a laptop and a Kindle device, he learned informatics, English and he continued to read e-books and to edit articles for those who have asked for his help, without taking any money. “I didn’t want to work like that, to make money on the Internet. I’m not that kind of human being when I do something, I just do it, from love, friendship and inspiration, sometimes I even wrote a poem, but I didn’t want to get more involved”, Sorin says.

His biggest earn that technology brought him was friendship. Sorin met a lot of people, some of them are visiting him regularly, and this makes him happy. As a fact, Sorin knows that happiness cannot be immobilized.

And because Sorin is passionate about the beauty of nature, the flora and fauna, his friends made him a summer house in his yard. A place where he moves in when the weather gets warm and he receives his guests, people, flowers, and birds, in a world that seems less like time, and more like forever.

Sorin thinks that this is just a phase on his way to joy, and even if he had to take a sleeping pill sometimes, to forget about his pain, he is grateful for every single moment of being awake, like he has received a precious gift. And this is also his advice for the young ones, to be grateful and happy for all, without imagining that their life would be better different. The simple fact that they are alive is a wonder.


This coverage is part of the #saniting project – “One step on the edge of life”. Any donation for building an emotional balance support center is welcome.