Six things worth knowing.

For fifty years we did not have a name for it.

My eldest son is one of the affected men in our family. He was not the first. There were others before him, older than him, going back further than anyone could remember clearly. When he was small we saw that he was not learning like the other children. We went to doctors in our town, then in bigger cities. Each one examined him, each one said something different, and each one sent us home without an answer. In all, thirteen boys and men across five generations of our family, and no explanation for any of them.

People talked, and people explained it for us. Some said it was a curse on the family. Others said it was the mothers: poor care during pregnancy, not enough food, some infection. My wife believed the curse for many years, and I could not tell her otherwise, because I had nothing better to offer her. When you have no explanation, other people supply one for you.

The hardest part has never been the not knowing. It is the caring. These men need looking after for their whole lives. A parent does it gladly, but a parent does not live forever. What has kept me awake for years is who will care for my son when I am gone. That weight falls on the brothers and sisters, who have their own families and their own struggles. Most families in our situation are not wealthy. There is no money for another dependent, and almost no support from the government.

Then there was marriage. When a match was being discussed for one of our girls, the other family would come to know about the condition, and they would back out of it. Our daughters and granddaughters were being refused over something nobody could even name. Some of our girls held back themselves. They did not know what they might pass on, so they were afraid to marry at all, and afraid to have children.

Two summers ago my granddaughter came to visit us. She heard her grandmother talking about her uncle and about the others. She asked me questions I had been asked before, but she asked them differently. She wanted the dates, the names, who was related to whom. She called relatives in other cities. She drew the family out on paper, generation by generation, until the whole shape of it was visible for the first time.

Then she took it further than any of us could. She read the medical papers. She found doctors and a laboratory who would listen to a family like ours. They did a test called whole exome sequencing. And after fifty years, we had a name: a change in a gene called UPF3B.

I want to say what that name did for us.

It ended the talk of a curse, and the blaming of the mothers. A curse cannot be explained, but a gene can. I stopped thinking of my family as marked. I began to think of us as people with a medical condition, like any other family that has an illness in it.

It settled our young women. Three of my granddaughters are married today. What changed for them was not a paper we showed to anybody. It was that they finally knew what they carried and what they did not, so they could decide about marriage and about children with information instead of fear.

It opened doors. Our young people can now see a genetic counsellor before they marry and before they have children. And I was able to go before a medical board with a diagnosis in my hand and obtain a lifelong dependent pension for my son. For years I had been turned away because I could not prove what was wrong with him. Most families like ours still receive nothing.

We are not cured. There is no medicine for this. But we are no longer a mystery to ourselves, and that has changed more than I expected.