Fragile X: My life with Henry

Lewis Irvine's brother was born with Fragile X, a genetic disability. Growing up with him wasn't easy, but now, at 19, he's a much-loved eccentric. So should his family worry about passing the condition to the next generation?

One of my earliest memories is of the birth of my brother: I am two and my hand, inconceivably tiny, is nestled in my father's massive fingers as he leads up me up the spiral staircase (is there one?) into the maternity ward of the Simpson Memorial Hospital, Edinburgh. Henry was born on 6 October and cried almost constantly from birth.

My mother says she always knew there was something wrong. They took him to the doctor, to the hospital, everywhere. And then eventually, when he was a toddler, Henry was diagnosed with Fragile X Syndrome; a relatively common genetic mutation that causes severe mental handicap.

Anything I say about that period of time, a difficult one for my parents, is pure speculation. But I do remember being told that he was "special" and growing up with him taught me lessons about kindness that would have taken me much longer to learn otherwise. This is not to say that our family wrapped him in cotton wool. Treating Henry as if he were "normal" was one of the most fundamental strengths of our domestic unit and we fought as much as any brothers would. But his condition meant that he could never gauge how much he was hurting me – I wasn't quite another person, I was a plaything.

The bright lights and Lycra of "professional" wrestling helped us to develop our fighting – to legitimise it to our parents and to give names to the various chokeholds and punches we inflicted on each other. Verbal fights were pointless; we had so little to disagree on. Henry is now 19 and still can't read or write, although a lot of it seems selective to me. (He has no trouble making out the words "How To Look Good Naked" in the paper and sneaking off "for an early night".) Obviously, puberty was and is a big issue.

Because Henry's body has developed but his emotional/intellectual side has not, the hormones that come with the former are very confusing for the latter. He's fascinated by women and the ways in which their bodies are different to his, but I doubt that he knows why. Now it seems unfathomable, but maybe someday in the future, in some sheltered community, he might go through the fumbling steps of coming to grips with another person's body.

I imagine relationships would maybe even be simpler for Henry – everything is so black and white for him. Doctors estimate that his mental development is about eight years behind his physical development and the effect is unnerving; you have a child's mind in an adult's body. I remember the bathroom attendant in Waverley Station shouting at my mother for bringing a male teenager into the woman's toilet. But Henry was a child. Before I left home and had the distance in which to think about his condition properly, I would terrify myself thinking about such situations – strangers trying to talk to him and expecting certain responses. Would he chokeslam them? Would he put the crippler crossface on them in the frozen dairy section of a supermarket? These ideas are not so unlikely.

People have in the past been shocked by the laughs that our family share at his expense, but laughing is always better than crying and Henry has given us a lot of laughs in his life. After the untimely death of our uncle last year, Henry's massively inappropriate comments broke up the sad silences and in a way, were some of the greatest emotional props in the grieving process. Several days before the funeral, the four of us were sitting around the kitchen table talking. Henry, very much outside our emotional bubble, after a long silence and a lot of familial hand-squeezing, said, "Well, that's me lost one uncle, then."

He reminds us to laugh at ourselves, too. In a family of journalists and creative professionals, his incessant football chanting and line-up interruptions bluntly punctuate the conversations that bore him.

Fragile X being the genetic condition that it is, I have always wondered about my own children. For years I delayed being tested. Would I raise a child with Fragile X? The answer for me was always yes. A "carrier" has a section of gene code on their X chromosome that repeats the sequence CGG several times. The more times the code repeats, the more likely there is to be a "problem". My mother is a carrier, which means that she does not have enough repeats to be handicapped herself but has enough repeats to constitute a genetic mutation that is inheritable. Her children's odds were 50:50. And then there were Henry and me.

Eventually I decided that I had to know. I had blood taken at my parents' surgery and when a letter came in the post to say my results were ready, I binned it. I couldn't face it. Six months later, I went to my own doctor in Glasgow who referred me to the genetic clinic here. The doctor explained the ins and outs of Fragile X. It was likely that I was a carrier and that meant two things. Firstly, it meant that any male children I had would be unaffected (since I would never give them my X chromosome, always my Y). Secondly, it meant that any and all female children I had would be mentally handicapped because I would have to give them the mutated chromosome.

I waited. Three weeks later the doctor called and I was all clear. The count was low enough. Fragile X was gone forever in my line of the family. I hung up and phoned my parents. But something the geneticist had said about the possibility of being a carrier had stuck with me – that "things could be different by then". What did that mean? I found it shocking. Henry is who he is, in part, because of his condition.

He may be severely mentally handicapped, but he is also very special; childlike; naive. He has no grasp of war or class or inequality. My parents have spent the best part of 20 years trying to ready him for the world, trying to imbue in him some sense of right and wrong; trying to make everything all right. It seems so strange then to consider that science will be able to commodify his condition, to make it a defect that can be removed. These issues form the core of a new book by Kieron Smith called The Politics of Down Syndrome. This book, for the first time, tackles stigma, inclusion and special needs in a head-on political manner.

Reading it, I found myself drawing constant comparisons to Henry's life. Smith fights for inclusion and full social integration, something that Henry never experienced properly (mainstream school didn't work for him and he ended up in a SEN (Special Educational Needs) school. What The Politics of Down Syndrome did make me realise is how far we've come as a society trying to understand special needs.

Henry has helped me enormously in my life and I feel guilty every day that I can't see and relate to him more. Being emotionally related to him has humanised my politics and has taught me how vital social care is for the disadvantaged.

But this isn't the broader picture. This isn't the place that mental disability commonly occupies. Not everyone has a relative who is able to devote as much time to them as my mother has to Henry.

Under the Conservative Government now, the cuts are beginning to affect the state-provided care on which so many children depend. Without the care that Henry has, up until now, received, I don't know if he would be the happy, albeit hormonal, person he is today. Henry is exceptionally lucky to have us and we are exceptionally lucky to have him. The SEN school Henry attended was wonderful for him, but perhaps this is missing the point.

In order to make real societal progress maybe we should improve the mainstream education system in order to allow children such as Henry to be part of it. It's staggering how much progress has been made in the past 40 years and now certainly seems like the time to try and break the final taboos about learning difficulties, rather than to solidify the boundaries between those with special needs and those without.

Under the Conservatives, this is what will happen and it is vital that we resist this and continue to destigmatise, rather than restigmatise an issue with which, by now, we should have come to terms.