Thursday, 19th November, Quito: Fundacion Sol Y Vida
Our hostess has asked us to give a presentation of our journey to her 10 year old daughter’s class. At one point, it was suggested that we’d be in the school’s 500 seater auditorium, but thankfully for us, it is scaled back to just one class of 30 because, inevitably, they don’t have an adaptor cable for a Mac to the projector. So every has to huddle round the computer as Mike and I burble our way through the Spanish presentation, being corrected every second sentence by a precocious girl in the front row.
From there we went into Quito to the Sol Y Vida Foundation, established 5 years earlier. Sol Y Vida is a charitable foundation which works hard to help very poor Ecuadorean children with cancer (http://www.solyvida.info/). There is only one children’s hospital in the country, and within that, there is only one public paediatric oncologist. In public hospitals, care is free, but patients must pay for their own medication. This can run into tens of thousands of dollars in the case of cancer treatments, and the parents of these children are some of the poorest people in the country – indigenous field workers who, between them and their working wives and families, earn little more than $200 a month. Sol Y Vida works hard to get foreign donations to help pay to save the lives of these children who otherwise would die.
They have a staggering 80 children on their books. These children are referred to the foundation by the Baco Ortiz children’s hospital and arrive often believing that a cancer diagnosis is a death sentence. They meet with the foundation’s utterly wonderful psychiatrist, are evaluated, and then given both the financial and emotional support that they would otherwise never have received. The children, with their parents, often have to come from far away to receive their chemo treatments (all outpatient), some travelling up to 10 hours on public buses and horses to get to the hospital. Families often lose out on their earnings because of the time it takes to come to Quito to receive the treatment for the child.
We meet a family whose 5 year old son, Tonio, has a tumour in his face. The family are poor, but they live in Quito. They have a 7 year old girl, Areceli, too, and the 4 of them sit on a sofa in the waiting area of the small Sol Y Vida office. We ask about their love story – the father, Jeraldo, was a teacher, and the mother, Araceli, his student. I don’t think the agegap is more than about 12 years, because the two of them still look young. Her childhood was hard, she is from an indigenous family who lived far away from Quito and worked in the fields. When she decided she wanted to go to school, she was sent to live with an aunt. It was hard, and when she walked into his classroom and first saw him, she felt a deep comfort in her heart which she hadn’t felt before – a certain, profound peace. He had noticed her (she is very pretty), and talked to his friends about her, but didn’t think that she would or could love him because he has a limp. He was wrong, she changed classes and their courtship began.
They had a lot of trouble conceiving. She was diagnosed with a tumour in her ovary, which she had removed but thought that she would never have children. When the little daughter arrived, they were elated. THeir little boy followed 2 years later. He was born with a small lump on his cheek, just below his right lip. She was concerned and went to see the doctor, who repeatedly assured her that it was fine. Only 3 years later did it start growing. Then they came into the hospital and little Tonio was diagnosed. A short while later, they went out to the country to visit the grandparents and the rest of Araceli’s family on the family farm. One day, Tonio was playing with his cousins, and managed to get hold of a machete. In a horrible accident, he cut off the ends of his third and fourth fingers. They were miles from any hospital, they had to throw away the end of the fingers – to Tonio’s horror. But really bizarrely, the ends of the two fingers have grown back. Nails and all! Little miracle fingers!
Though their experience sounds like a nightmare, they are gentle and kind. She references God a lot, and it’s clear that their faith has been a huge support throughout their son’s illness. The father talks amazingly candidly about how strongly he empathises with his son, as he was very very ill for the first few years of his life, with meningitis which left him with a badly withered leg. He can’t bear to see his son going through the same suffering. As he talks of this, he cried openly. I find it very hard not to cry during the interview. This is a family with so much love, the children are both so adorable, it is heartbreaking to hear their story. When we ask, at the end, “what is love?”, the little son, sitting on his father’s lap, says “Amor es mi pappi” – love is my daddy. At which point I start to sob.
