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Sister: A Novel Part 4

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'I'm sorry, I'm afraid I don't know . . .'

I know that it's of no use to the trial, but I'd like him to know more about you than hard-edged facts in lever-arch files.

'It means living in the here and now,' I explain. 'Experiencing the present without worrying about the future or cluttering it with the past.'

I've never bought that sacrament; it's too irresponsible, too hedonistic. It was probably tacked on by the Greeks; Dionysus gatecras.h.i.+ng Catholicism and making sure they at least had a party.

There's something else I want him to know. 'Even at the beginning, when the baby was little more than a collection of cells, she loved him. That's why she thought her body was a miracle. That's why she would never have had an abortion.'

He nods, and gives your love for your baby a decently respectful pause.

'When was the baby diagnosed with cystic fibrosis?' he asks.

I am glad he called him a baby not a foetus. You and your baby are starting to become more human to him now.

'At twelve weeks,' I reply. 'Because of our family history of CF she had a genetic screen.'

'It's me.' I could tell that at the other end of the phone you were struggling not to cry. 'He's a boy.' I knew what was coming, 'He has cystic fibrosis.' You sounded so young. I didn't know what to say to you. You and I knew too much about CF for me to offer plat.i.tudes. 'He's going to go through all of that, Bee, just like Leo.'

'So that was in August?' asks Mr Wright.

'Yes. The tenth. Four weeks later she phoned to tell me that she'd been offered a new genetic therapy for her baby.'

'What did she know about it?' asks Mr Wright.

'She said that the baby would be injected with a healthy gene to replace the cystic fibrosis gene. And it would be done while he was still in the womb. As he developed and grew the new gene would continue to replace the faulty cystic fibrosis gene.'

'What was your reaction?'

'I was frightened of the risks she'd be taking. Firstly with the vector and-'

Mr Wright interrupts. 'Vector? I'm sorry I don't . . .'

'It's the way a new gene gets into the body. A taxi if you like. Viruses are often used as vectors because they are good at infecting cells in the body and so they carry in the new gene at the same time.'

'You're quite an expert.'

'In our family we're all amateur experts in the genetics field, because of Leo.'

'But people have died in these gene therapy trials, Tess. All their organs failing.'

'Just let me finish, please? They're not using a virus as a vector. That's the brilliant thing about it. Someone's managed to make an artificial chromosome to get the gene into the baby's cells. So there's no risk to the baby. It's incredible, isn't it?'

It was incredible. But it didn't stop me from worrying. I remember the rest of our phone call. I was wearing my full older-sister uniform.

'OK, so there won't be a problem with the vector. But what about the modified gene itself? What if it doesn't just cure the CF but does something else that hasn't been predicted?'

'Could you please stop worrying?'

'It might have some appalling side-effect. It might mess up something else in the body that isn't even known about.'

'Bee-'

'OK, so it might seem like a small risk-'

You interrupted, elbowing me off my soapbox. 'Without this therapy, he has cystic fibrosis. A big fat one-hundred-per-cent definite on that. So a small risk is something I have to take.'

'You said they're going to inject it into your tummy?'

I could hear the smile in your voice. 'How else will it get into the baby?'

'So this gene therapy could well affect you too.'

You sighed. It was your 'please get off my back' sigh, the sigh of a younger sister to an older one.

'I'm your sister. I have a right to be concerned about you.'

'And I'm my baby's mother.'

Your response took me aback.

'I'll write to you, Bee.'

You hung up.

'Did she often write to you?' asks Mr Wright.

I wonder if he's interested or if there's a point to the question.

'Yes. Usually when she knew I'd disapprove of something. Sometimes when she just needed to sort out her thoughts and wanted me as a silent sounding board.'

I'm not sure if you know this, but I've always enjoyed your one-way conversations. Although they often exasperate me, it's also liberating to be freed from my role as critic.

'The police gave me a copy of her letter,' says Mr Wright.

I'm sorry. I had to hand all your letters to the police.

He smiles. 'The human angels letter.'

I'm glad that he's highlighted what mattered to you, not what's important for his investigation. And I don't need the letter to remember that part of it: 'All these people, people I don't know, didn't even know about, have been working hour after hour, day after day, for years and years to find a cure. To start with the research was funded by charitable donations. There really are angels, human angels in white lab coats and tweed skirts organising fun runs and cake sales and shaking buckets so that one day, someone they've never even met, has her baby cured.'

'Was it her letter that allayed your fears about the therapy?' asks Mr Wright.

'No. The day before I got it, the gene therapy trial hit the US press. Gene-Med's genetic cure for cystic fibrosis was all over the papers and wall-to-wall on TV. But there were just endless pictures of cured babies and very little science. Even the broadsheets used the words "miracle baby" far more than "genetic cure".'

Mr Wright nods. 'Yes. It was the same here.'

'But it was also all over the net, which meant I could research it thoroughly. I found out that the trial had met all the statutory checks, more than the statutory checks, actually. Twenty babies in the UK had so far been born free of CF and perfectly healthy. The mothers had suffered no ill effects. Pregnant women in America who had foetuses with cystic fibrosis were begging for the treatment. I realised how lucky Tess was to be offered it.'

'What did you know about Gene-Med?'

'That they were well established and had been doing genetic research for years. And that they had paid Professor Rosen for his chromosome and then employed him to continue his research.'

Allowing your ladies in tweed skirts to stop shaking buckets.

'I'd also watched half a dozen or so TV interviews with Professor Rosen, the man who'd invented the new cure.'

I know it shouldn't have made a difference but it was Professor Rosen who changed my mind about the therapy, or at least opened it. I remember the first time I saw him on TV.

The morning TV presenter purred her question at him. 'So how does it feel, Professor Rosen, to be the "man behind the miracle", as some people are dubbing you?'

Opposite her Professor Rosen looked absurdly cliched with his wire gla.s.ses and narrow shoulders and furrowed brow, a white coat no doubt hanging up somewhere off camera. 'It's hardly a miracle. It's taken decades of research and-'

She interrupted. 'Really.'

It was a full stop but he misinterpreted her and took it as an invitation to carry on. 'The CF gene is on chromosome seven. It makes a protein called cystic fibrosis transmembrane conductance regulator, CFTR for short.'

She smoothed her tight pencil skirt over her streamlined legs, smiling at him. 'If we could have the simple version, Professor Rosen.'

'This is the simple version. I created an artificial microchromosome-'

'I really don't think out viewers,' she said, waving her hands as if this was beyond mortal understanding. I was irritated by her and was glad when Professor Rosen was too.

'Your viewers are blessed with brains are they not? My artificial chromosome can safely transport a new healthy gene into the cells with no risks.'

I thought that someone probably had had to coach him in how to present his science in Noddy language. It was as if Professor Rosen himself was dismayed by it and could do it no longer. 'The human artificial chromosome can not only introduce but stably maintain therapeutic genes. Synthetic centromeres were-'

She hurriedly interrupted him. 'I'm afraid we'll have to skip our science lesson today, Professor, because I've got someone who wants to say a special thank you.'

She turned to a large TV screen, which had a live feed from a hospital. A teary-eyed mother and proud new father, cuddling their healthy newborn, thanked Professor Rosen for curing their beautiful baby boy. Professor Rosen clearly found it distasteful and was embarra.s.sed by it. He wasn't revelling in his success and I liked him for it.

'So you trusted Professor Rosen?' asks Mr Wright, without volunteering his own impression, but he must have seen him on TV during the media saturation of the story.

'Yes. In all the TV interviews I watched of him he came across as a committed scientist, with no media savvy. He seemed modest, embarra.s.sed by praise, and clearly not enjoying his moment of TV fame.'

I don't tell Mr Wright this, but he also reminded me of Mr Normans (did you have him for maths?), a kindly man but one who had no truck with the silliness of adolescent girls and used to bark out equations like firing rounds. Lack of media savvy, wire-rimmed gla.s.ses and a resemblance to an old teacher weren't logical reasons to finally accept the trial was safe, but the personal nudge I'd needed to overcome my reservations.

'Did Tess describe what happened when she was given the therapy?' asks Mr Wright.

'Not in any detail, no. She just said that she'd had the injection and now she'd have to wait.'

You phoned me in the middle of the night, forgetting or not caring about the time difference. Todd woke up and took the call. Annoyed, he pa.s.sed the phone to me, mouthing, 'It's four thirty in the morning for chrissakes.'

'It's worked, Bee. He's cured.'

I cried; sobbing, big-wet-tears crying. I had been so worried, not about your baby, but about what it would be like for you looking after and loving a child with CF. Todd thought something terrible had happened.

'That's b.l.o.o.d.y wonderful.'

I don't know what surprised him more, the fact I was crying over something wonderful, or that I swore.

'I'd like to call him Xavier. If Mum doesn't mind.'

I remembered Leo being so proud of his second name; how he'd wished it were what he was called.

'Leo would think that really cool,' I said, and thought how sad it is that someone dies when they're still young enough to say 'really cool'.

'Yeah, he would, wouldn't he?'

Mr Wright's middle-aged secretary interrupts with mineral water and I am suddenly overwhelmed by thirst. I drink my flimsy paper cupful straight down and she looks a little disapproving. As she takes the empty cup I notice that the inside of her hands are stained orange. Last night she must have done a self-tan. I find it moving that this large heavy-set woman has tried to make herself spring pretty. I smile at her but she doesn't see. She's looking at Mr Wright. I see in that look that she's in love with him, that it was for him she made her arms and face go brown last night, that the dress she's wearing was bought with him in mind.

Mr Wright interrupts my mental gossip. 'So as far as you were concerned there weren't any problems with the baby or the pregnancy?'

'I thought everything was fine. My only worry was how she would cope as a single mother. At the time it seemed like a big worry.'

Miss Crush Secretary leaves, barely noticed by Mr Wright who's looking across the table at me. I glance at his hand, on her behalf: it's bare of a wedding ring. Yes, my mind is doodling again, reluctant to move on. You know what's coming. I'm sorry.

3.

For a moment the doorbell ringing was part of my colour red dream. Then I ran to the door, certain it was you. DS Finborough knew he was the wrong person. He had the grace to look both embarra.s.sed and sympathetic. And he knew my next emotion. 'It's all right, Beatrice. We haven't found her.'

He came into your sitting room. Behind him was WPC Vernon.

'Emilio Codi saw the reconstruction,' he said, sitting down on your sofa. 'Tess has already had the baby.'

But you would have told me. 'There must be a mistake.'

'St Anne's Hospital has confirmed that Tess gave birth there last Tuesday and discharged herself the same day.' He waited a moment, his manner compa.s.sionate as he lobbed the next hand grenade. 'Her baby was stillborn.'

I used to think 'stillborn' sounded peaceful. Still waters. Be still my beating heart. Still small voice of calm. Now I think it's desperate in its lack of life; a cruel euphemism packing nails around the fact it's trying to cloak. But then I didn't even think about your baby. I'm sorry. All I could think about was that this had happened a week ago and I hadn't heard from you.

'We spoke to the psychiatry department at St Anne's,' DS Finborough continued. 'Tess was automatically referred because of the death of her baby. A Dr Nichols is looking after her. I spoke to him at home and he told me that Tess is suffering from post-natal depression.'

Facts of exploding shrapnel were ripping our relations.h.i.+p apart. You didn't tell me when your baby died. You were depressed but you hadn't turned to me. I knew every painting you were working on, every friend, even the book you were reading and the name of your cat. (Pudding, I'd remembered it the next day.) I knew the minutiae of your life. But I didn't know the big stuff. I didn't know you.

So the devil had finally offered me a deal after all. Accept that I wasn't close to you and, in return, you had not been abducted. You had not been murdered. You were still alive. I grabbed the deal.

'We're obviously still concerned about her welfare,' said DS Finborough. 'But there's no reason to think anybody else is involved.'

I briefly paused, for formality's sake, to check the small print of the deal. 'What about the nuisance phone calls?'

'Dr Nichols thinks Tess most probably overreacted because of her fragile emotional state.'

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Sister: A Novel Part 4 summary

You're reading Sister: A Novel. This manga has been translated by Updating. Author(s): Rosamund Lupton. Already has 457 views.

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