No two situations are the same. Our situation is similar in the sense that it was a normal pregnancy and birth and that we didn't know there was anything amiss until our daughter, Eleanor, who's 17 next week, was about six months old, and we noticed that she wasn't reaching normal milestones. It all unfolded quite slowly.

The significant difference [between us and Ashley's family] is that our daughter is mobile - she's able to walk, or get in to the bath, and feed herself - but she can't speak. She's still in diapers, so we have to deal with that. You don't expect to still be changing nappies when your child is 16 or 17, but it can be done.

It's tricky to assign developmental ages, but mentally Eleanor's about a year old, and we don't expect her skills to develop any further. A question I would ask Ashley's family is: "Have you considered whether how she is at nine will really be how she will be at, say, 17?" Nobody would say my daughter is the same person now that she was at nine. She's more assertive, she's got a bit of a sense of humour - there are all kinds of things like that, which make you wonder about artificially interfering with development: the assumption seems to be that because she has never changed, she won't change, and I wouldn't rely 100% on that. Who knows how somebody lives in their own body?

Having a disabled child does put a lot of stresses on the family. Somebody has to be there the whole time. There's very little scope in your life for doing anything impulsive. You can still have a social life, but you have to plan for it in a way that you wouldn't normally. Equally, it's quite hard to take our daughter out.

In our case it was particularly difficult to do what both of us wanted to do, which was to continue working. I went part time for a while when both Eleanor and her elder sister were small, but I've never stopped working. All the professionals involved with our daughter have always assumed that there will always be at least one parent at home, which we have found difficult. I think the fact that both of us work in responsible jobs - I am corporate change manager at Oxfordshire county council, and my husband is chief editor of the Oxford English Dictionary - is important for our own sense of who we are. You don't want to be defined as just the parent of a disabled child. I've never felt guilty about that decision. I don't think guilt is a very helpful emotion under the circumstances. I know that many parents split up. You're almost the exception if your marriage survives, as ours has.

There is always the danger that you can turn yourself into a kind of martyr, or a victim, and we have very consciously tried to avoid doing that. You come across parents whose whole lives have been consumed by their child's disability. It's very easy to be marginalised, and you have to guard against it. I often have to decide at what point to tell somebody that I have a child who's severely disabled, because it alters their perception of you, at least temporarily.

I probably overcompensate for it in some ways, and I definitely pick and choose who and how much I tell.

My first instinct when I heard what Ashley's family had done was to think, that's not something I would do. I never considered it as an option, I wasn't offered it, and I'm not even sure it would be legal in this country. We recently raised, with one of our daughter's doctors, the issue of whether she should be protected by contraception - not necessarily now, but she is coming up to 17 and she will inevitably be mixing with other young people, and as Ashley's parents point out, people with disabilities can be abused - you would hope that it would never happen, but it can. But even to get contraception, an implant or something like that, for somebody who can't give consent, is an extraordinarily complex procedure.

When Ashley is older, legally an adult, her parents will not have the same kinds of rights over her as they have now. Also, it looks as though she has a normal life expectancy. When she's 50 (in a nine-year-old body, I think that's why people find it spooky), who's going to look after her? This is a solution for the next few years, maybe, but is it really a proper long-term solution? I don't know. It's very hard to say. It's hard to put yourself in someone else's place.

I'm really loath to criticise, because unless you've been there, or even if you have, nobody can tell what it's like on a day-to-day basis for that particular family, and I'm a bit wary that this story could set parents of disabled children against each other. I think we need to hang in there together, because what this story shows is that none of us actually gets very much in the way of support. It says that if you've got a disabled child, every family's for themselves. And clearly these people have found their own solution, and it's quite an extreme one.

I think you do have to accept that your disabled child is a whole person who is going to grow up. And I would rather see resources concentrated on dealing with the reality of it, and the truth is that there aren't that many, wherever you live.

· Interview by Aida Edemariam.