Josué's Story

A Child's First-Hand Account of His Journey

My parents were pleasantly surprised when I was born because they weren´t expecting me to have carrot colored hair. It was a beautiful spring day. When they took me to the room the morning sun was pouring through the window and there were my sister and my family. They were dying to meet me and they talked and talked about me and laughed. They thought my hair was funny. It was like strands of pumpkin circling my head as it was long and a bit manic. We later had funny stories that I heard my mother repeat on several occasions.

And so I grew. My parents still remember the day I started walking. They sat on the floor and called me towards them. Then around the house, in the school playground, in the park. I loved climbing and would raise myself up to the highest places.

After the summer of 2007 I started dragging my left leg a bit but nobody noticed, not at school, not my teachers, not my friends, nobody except for my parents. Nothing was hurting then and I wasn’t tired either. I was very happy.

At first I thought it was strange to see so many doctors. My parents could not have imagined what I had until I had my MRI scan. As I remember it my aunt Chus who explained to me that I had a type of marble at the top of my spine, well, very close to the nape of my neck and she told me that I needed an operation. That year was important in my life, it was the first time that my birthday had double figures and it was emotional blowing out two candles on my chocolate cake. If I had reached two figures, I thought while I blew the candles out, imagine how many I could reach! From then on I felt more grown up and every day I was enjoying sports more and more, especially football (soccer). We trained at school and played every Saturday. I was the goalkeeper for my year’s team, and just like everyone else, we always liked winning.

At Christmas 2007 I tripped two or three times in the main square in Valladolid which is where we spent Christmas with my family and I almost fell. I also stopped using my left hand to eat. I still didn’t really understand what had happened to me. Afterwards we went to Rome (Italy), and in St. Peter’s Square, I opened out a really big Spanish flag. My mother believes that the Pope saw me and silently blessed me. A few days before my operation I drew a picture on a sheet of paper. It was of the hospital and the doctor. I was also in the picture lying on a stretcher with a drip in my arm, and then I coloured it in.

I always feel the love of my parents, my sister and my family and although sometimes I may be far from them, at school, with my friends or on some trip I notice their warmth and presence and that makes me feel very secure. I now believe that this love they give me protects me and has been very important in my illness.

One evening as my parents were starting to fall asleep on the sofa they happened to see a programme on television with the operation that the doctor Jallo had performed on a boy. It was a very similar case to mine and everything turned out brilliantly. Shortly afterwards, I started to get worse, it was harder and harder to walk, my neck hurt and some days I missed school. Later I started to use a wheelchair for all journeys even around my house and I stopped going to school. I also needed help to eat, to get dressed, to do anything. Home was always a happy place. If I asked my parents they would tell me that they were worried but that they believed that an answer would soon be found. And then one day, they told me that we were going to a hospital far away from here, in Baltimore where there were some very good doctors and I began to dream that they would heal me and I would leave the hospital walking and wearing my favourite footballer’s shirt. I was eager to know the USA. That way I would be a bit closer to The Lakers, to Pau Gasol and Kobe Bryant, a bit closer to the Celtics, to Garnett and Rondo, and there we would be able to watch the NBA finals and the beautiful basketball show. My parents have promised me that next time we travel to the United States we will go and watch a basketball match.

I also knew where many of the American states were on the map and I also knew a bit about their culture and customs. Now I had to concentrate more on Maryland, get to know where the hospital was, the port and the streets of Baltimore. It was the city that was going to welcome us.

The doctors operated on me on June 3rd. They had already told us that it was going to be a very difficult procedure. For us it was a very special day. I will never forget my uncles and aunts and my friends calling from Spain to cheer me on and make me smile as much as the clowns in the circus. The truth was that it didn’t seem like I was going into surgery in a few hours. The doctors made us feel very relaxed. They are also special people. Later, my father took me to surgery and I don’t remember any more. I fell asleep quickly, but I know that they worked extremely hard. The doctors opened me up, cut and removed my tumor, and cleaned my insides very carefully. I’m sure they sweated like sportsmen. Later, just like in the football World Cup, they were successful and victorious. When my mother talks about my operation and the doctors she always says that God’s hands are in their hands.

After that I started a lot of rehabilitation and to recover bit by bit. Now, every day, before going to bed, when the moon starts lighting up the sky, we join our hands and remember the doctors, we thank them and wish good things for them. We want the glory to continue in their work and their lives and want them to be healthy so that they can continue with all the good that they do for children and people in need, so that they can continue to flourish on their way. Then we open the window and blow our wishes with all our might and let them fly.

And when I am grown up or when I am like my granddad, in the soft dusk of the day, I will still remember the smell of my childhood, a country, a city, a hospital, a team and two doctors, the trace of my childhood as beautiful as the morning light.

Baltimore and the John Hopkins Hospital, Dr Jallo and Dr Quiñones-Hinojosa, so far in the distance and so close in my heart.

Love from,
Josué Santiago