Traffic had ground to a halt on the M5 southbound carriageway and the windscreen of Pete’s hire car was becoming obscured by insistent snowflakes, each one larger, colder, firmer than the last. He had turned the wipers off because he’d been stationary for a few minutes now – there must be an accident ahead – and it was becoming harder to make out the lines between the lanes.
He was going to be late. He reached for his mobile phone and sent a quick text to Lou to let her know. She’d be delighted, probably. If he didn’t manage to make it to the Best Interests meeting, who else was going to argue from Patience’s side? He still wasn’t sure what Eliza’s decision was; she had refused to share it. But what he did know was that all that stood between Patience and the lumbar puncture needle was this meeting and the panel that would vote on her fate.
He also wasn’t sure of the points of view of the other participants of the meeting – her lead carer, her GP, her social worker – but he knew that Louise was a powerful speaker, a force to be reckoned with. Pete had always felt glad of this in the past; that aspect of looking after his daughter was not his forte. Now, however, he vehemently wished that it was.
Best Interests meetings were strange affairs. It seemed ridiculous to him that being Patience’s parent simply wasn’t enough in the eyes of the law. Once she’d turned eighteen they’d been forced to make big decisions about her care by committee, because she wasn’t able to make decisions for herself. To him, Patience was an eternal child, and so this insistence on consulting with professionals seemed ludicrous to him, an appalling imposition on his parental rights.
It was 9.37 a.m. Just over forty minutes to go before the meeting was scheduled to start. The car in front edged forward a few metres, so Pete put the car into gear and set off once more. Although he was maintaining a gentle pressure on the accelerator, his other foot was pushing hard against the floor, as if its impotent manoeuvres could force the traffic to part. If he missed this meeting, his Patience – his beautiful, innocent Patience – was done for.
Every night throughout her younger years, he’d performed a ritual. He would pick her up, fresh from a bath, towel rub and nappy change, cradling her in his arms like a newborn, and place her in bed. Sometimes, after he’d pulled the duvet up under her chin, he would kiss her, stroke her sleek blonde hair and then kneel there, as if in prayer, although he had no faith to speak of. When she had fallen asleep, her face would relax, released at last from the pain she seemed to be experiencing daily, from the horror of whatever was going on in her brain. She had looked angelic, lying there like that. Normal, even.
In the early years, he had hoped desperately that she might wake up cured, that everything that had gone before might be consigned to a passing nightmare. It had taken him years to give up that hope. The process had been a kind of mourning; he had gradually, painfully learned to relinquish all desire for her to be different, learned to accept her as she was.
To help him get over his grief for a daughter he would never have, he had examined her closely, questioning every look and every movement, and had come to believe that she was happy – content, even. She had passed through hell and come out the other side, and the life she had been left with, although it was far from the life he had hoped for, was a good one. For a start, music gave her obvious joy. And when he hugged her at bedtime now, she seemed to radiate calm. He believed she had found peace. And that, absolutely, was worth fighting for, he thought.
The pace of the traffic was picking up and Pete could just make out the exit sign for his junction through the snow flurries. He indicated left and slid sideways into the nearside lane, driving up the exit to the roundabout at a crawl. It was 10.07 a.m. and he was just a couple of miles away now; he might just make it, but it depended on how the roads were from here. These were residential streets, and both sides of the road were lined with schoolchildren making the most of a snow day, building snow-men, snow-women and snow-dogs with wet mittens, wearing oversized hats and with the promise of hot chocolate before lunch.
Now 10.18. A bus was resting, as if spreadeagled, across the road ahead. Only a tiny trickle of traffic was squeezing past it in single file, the overwhelmed driver standing by its bonnet trying to direct the traffic while speaking frantically into his phone, presumably summoning help. When he went back to his cab for a moment, traffic coming from the opposite direction surged forward into the gap and streamed through it, not giving any quarter to the opposing vehicles. Pete sighed loudly, pulled his car up onto the ice-encrusted pavement, and switched off the engine. He would have to walk from here. He retrieved a pair of thick gloves and his padded, down-filled coat from the back of the car and set off, pulling up his hood as he went.
How far was it from here? Perhaps half a mile, give or take. As he marched on, he looked upwards at the millions of flakes falling from the heavens. Each single one unique, each one following its own path, buffeted by the winds, onto the ground below. And each one set for extinction when the earth warmed. He stuck out his tongue and let one fall onto it, feeling it begin to melt on contact. It tasted a little like the sea.
He was almost there, but he’d need to run now if he wasn’t going to miss the first fifteen minutes. His shoes, solid black lace-ups selected for smartness, were not made for jogging through snow. The left one had begun to leak, freezing cold water seeping into his sock. He tried to keep up a steady pace, drawing on the hours he’d spent in the gym in an endless parade of hotels, filling his evenings and sleepless nights with some purpose.
He checked his watch again – 10.33. The meeting had started now, but he could just make out the sign announcing Patience’s respite care home ahead. He put on a further surge of speed, willing his feet not to slip and his legs to find the power to keep moving. Always an active man, his joints had begun to feel rusty lately, like an outdoor tap left unattended during the winter. He knew that he could no longer rely on his physical strength, an attribute which had been his calling card for decades. But this recession into old age didn’t worry him as much as the fact that he didn’t really have other strengths to draw on.
It was 10.40 when he rang the doorbell, trying to breathe deeply so that he could recover faster. He swallowed to try to subdue an irritation in his windpipe, the cold that had eaten into his lungs making him cough.
‘Mr Willow! Good morning. We were wondering whether you’d make it.’
It was Beth. She was young, fizzy, joyful and he liked her. If she was coming to the meeting, he was glad.
‘Yes, the snow,’ he said, stomping his feet to shake it off his shoes.
‘Yep, we’re short-staffed this morning, several of the carers haven’t made it in. So I’ve got to look after the residents with Lutsi, I’m afraid, but Maggie, the manager, is there.’
This was not good news. Pete did not like Maggie. When he’d first met her, they’d eyeballed each other and known instinctively where they both stood. She was also a Birmingham girl, judging by her accent and turn of phrase, and had probably grown up a few streets away from him, although he had never asked. But instead of this fostering understanding, their similar childhoods had made them suspicious of each other; two individuals who’d successfully escaped the estate, each afraid the other would unsettle the balance they’d fought hard to introduce into their separate lives. She didn’t like him; he was sure of it.
Beth ushered him into the small office which doubled as a meeting room when necessary. The room was overheated and smelt of dust, disinfectant and coffee. A round table had been shoehorned into the rectangular space, which also accommodated a desk, two large filing cabinets and an assortment of mismatched chairs. Sitting in five of them were Lou, Eliza, Patience’s GP Dr Aitken, care home manager Maggie and Patience’s social worker, David, each cradling a mug of coffee. Pete took the last chair, which was wedged against a radiator.
‘I’m sorry I’m late,’ he said, sitting down. ‘The weather made my journey very tricky.’
‘That’s OK,’ said Dr Aitken, a wiry-haired woman in her fifties who combined an air of efficiency with maternal warmth. ‘It’s awful out there. Well done for making it. It looks like it was hard work.’ Pete was sweating and, as he peeled off his layers, he realised his shirt was stuck to his back. ‘Anyhow, as we’re all here now, let’s get started. I’m going to chair this meeting. Any objections?’
Everyone shook their heads.
‘Great. Let’s begin with a summary of the situation at hand. Patience Willow has been offered a place on phase one of a trial of a new gene therapy approach. This trial is promising the possibility of life-changing results. I say possibility, because as it’s experimental, by the very nature of the beast it will be hit and miss. I’ve read the submission that the trial team put into the Medical Research Council, and I’ve provided copies here for reference – I’m assuming you’ve all read it?’
The doctor looked around and everyone nodded.
‘Fine. Well, in summary, this is what the trial consists of: Patience will need to be an in-patient in Birmingham City Hospital for at least three days. The therapy will be administered through lumbar puncture and she will need to be monitored for some time afterwards. Extra nursing staff will be sent to wherever she is after she’s discharged so that they can keep an eye on her condition.’
The doctor took a large sip from her coffee. ‘So the hows and wheres are taken care of. The whys – Professor Larssen, who leads the trial team, says in the proposal that his new therapeutic approach could potentially reverse Rett syndrome—’
‘I want to stop you there,’ said Pete. Dr Aitken looked affronted by his interruption, but he ignored her. ‘We can’t have this meeting without talking about Professor Larssen’s past. You’ll all have read the article in the paper a few weeks ago. His credibility is in tatters. There are serious questions being raised—’
‘There aren’t any being raised about this trial, Pete,’ Louise said harshly, sounding like a primary school teacher chastising a child.
‘If I may?’ said Dr Aitken, ‘I anticipated this would come up, so I took it upon myself to look up the last trial, to try to establish the facts. There are very few similarities between the two trials and, as we’ve seen, the relevant permissions for this one have been granted after a full and thorough evaluation. This trial has completely different backers and a completely different method. I believe that we should judge it on its own merits. Any thoughts?’
The doctor’s piercing gaze did not invite the comment she had apparently asked for. Pete found that he could think of no suitable response.
The doctor cleared her throat, satisfied. ‘So, to continue. In his assessment of the benefits of the new therapy, Professor Larssen talks of regaining the ability to speak, the ability to breathe normally, the use of hands, legs, feet. These are amazing possibilities. But he also talks of risks, and that’s what we’re here to discuss. Among these are depression, confusion, raised intracranial pressure – that’s pressure building within the brain – and seizures, a particular concern given Patience’s recent episode. Who would like to go first?’
‘I will,’ said Louise, leaning forward in her chair, her notes clutched in her hands.
‘Go ahead, Mrs Willow.’
‘You all know, I think, that I’m the driving force behind this. I’m working as part of the trial team at the university and they have accepted Patience onto the trial. She’s incredibly lucky to get a place; two out of three families who applied were rejected. Sometimes that was because their son or daughter was too young, or too unwell, but often it was just sheer weight of numbers. The trial has been very oversubscribed because of what it might be able to achieve.’
Louise was gathering pace now. Pete knew that she would have rehearsed what she had to say until she was word perfect.
‘Every check and consideration has been made in designing this trial so that it’s as safe as possible. It’s taking place in one of the best hospitals in the UK, with skilled surgeons and an amazing ITU. The charities that are supporting it have provided funding for vein viewers so that researchers will find it easier to locate their typically tiny veins for blood draws; they’ve also given us funding to cover hotel stays and transport costs. The trial team have also promised that any additional medical needs created as a result of the trial will be paid for by them, with every urgency. They are funding nurses to provide extra care for at least a month after the trial at the homes of all of the participants. In conclusion, I believe that we should not let this opportunity for Patience pass us by. This could change her life. She could be one of the first Rett people in the world to live free of the disease. Personally, I think that’s worth the risks.’
Louise glanced around her, checking that her words had had the desired effect. Maggie was certainly looking impressed. She was generally on her side anyway, though, thought Pete. David had been taking notes throughout and he was now looking at them thoughtfully. He was harder to read.
‘Who’d like to go next?’
‘I’ll do it,’ said Maggie, taking a deep breath and sucking in her ample stomach before she went on. ‘I don’t have much to add to that,’ she said, smiling at Louise, ‘but for what it’s worth, we think that this is an amazing chance for Patience. We did have concerns about the need for extra care after her hospital discharge, but this has been resolved with the pledge of funding by the trial team. Louise and I have discussed things and we’re happy to offer Patience a bed here after she’s discharged so that she can be monitored twenty-four hours a day.’
Pete looked across the table and saw David scribbling away. He’ll like that, he thought. He’ll like the idea of her staying outside the home – he’d been trying to persuade them to institutionalise her for years. And of course Maggie would love this trial. If Professor Larssen’s Magic Medicine manages to cure Rett syndrome, the cash-strapped social care system will have a load taken off it. What’s not to like?
‘Thank you,’ said Dr Aitken. ‘Now, Pete?’
Pete reached into his back pocket and pulled out a folded A4 sheet upon which he’d written some headlines last night.
Fear
Life
Death
Future?
‘I don’t know if you lot notice, but when Patience is in a strange place, her face seizes up,’ he began. ‘I think she’s frightened. I think anything new frightens the life out of her. I’m worried that the hospital, all the new folk around her, the strange noises, will distress her. Secondly, she has a great life already. It’s not the life I wanted for her, of course, but she has a nice place to live, she loves music, she loves food, she has a loving family and she’s not in pain most of the time. I believe her quality of life is good. Thirdly, you have all skirted past this, but one of those side effects listed in that document is death. I know it’s far down and that means it’s less likely, but it’s still a chance. And I don’t think anything is worth that. She has been through so much, so many operations and had so many close shaves to get this far, and I really don’t think we should jeopardise her life, which we’ve fought hard for, for these promises which, frankly, sound like the good professor has plucked them out of thin air.’
He paused to take a sip from his coffee, which was now going cold. He put it back down and stared into it as he spoke. ‘And the last point I have here is the future. I don’t want to condemn Patience to a life of misery and pain. She’s already had a seizure this year, just the one, but still – what if the gene therapy damages her brain and makes it worse?’ Pete moved his gaze from the table to his wife, who was glaring at him. ‘Don’t look at me like that, Lou,’ he said. ‘I know what you’re thinking – you reckon she has that right now – but that’s where we differ. I think she’s happy now. I think she’s content. And I think this trial has much more to do with you and your wishes than it does with her.’
There was silence for a few seconds, during which, if he’d been sitting closer, Pete reckoned there was a good chance Lou would have taken a swipe at him.
‘OK, thanks for that, Pete,’ said Dr Aitken. She looked across to the other side of the table.
‘Eliza? As Patience’s consultee, you are acting on your sister’s behalf in this meeting. Could you tell us whether you have decided to give your approval for the trial?’
Eliza cleared her throat and Pete took a deep breath. He had no idea what she was about to say, but whatever it was, it would have a profound effect on Patience, who was at that very moment sitting next door watching a DVD, absolutely oblivious to the fact that her future was being decided in this room.
‘Aside from all of the things Mum has said, I want to say that I am a bit worried about that article, too,’ Eliza began. ‘I understand why Dad is so concerned. I really do. This is a huge thing, a frightening thing, to decide upon.’ Pete gave her a grateful smile. ‘I feel – I feel… I don’t know how to say this…’ She took a deep breath. ‘I feel like Patience and I have a connection. We have grown up with each other, obviously. And I’ve spent a great deal of time talking to her, monitoring how she responds. I know there is some disagreement on this,’ Eliza avoided her father’s gaze, ‘but I personally feel that she understands when we speak to her. And so I went to see her, to ask her what she wanted me to do.’ The whole room, Pete included, looked at Eliza, hanging on her every word. ‘And, well, instinctively I feel that she wants this. That she wants her chance. She as good as told me to do it, the other day. She cried.’ All of the other attendees were silent, their attention rapt. ‘That’s it,’ she said, her eyes cast down. ‘That’s all I wanted to say.’
Pete could see that Louise was smiling at Eliza.
‘So you will be voting in favour of the trial, then?’ the doctor asked Eliza.
‘Yes, I will,’ she replied, before looking across at Pete. ‘But Dad, it was so difficult. I genuinely wasn’t sure, until I saw Patience.’
Pete saw Louise’s triumphant smile flicker.
‘I know, pet,’ he replied, his heart sinking.
‘David – do you have anything to add?’ asked Dr Aitken, after a pause.
The social worker shuffled his papers and looked up.
‘I’ve read this document extensively and conducted my own research. I’m happy with the way it’s presented, and I can see its obvious benefits. But Mr Willow’s point about the risks is very concerning. Have we brushed them aside too easily? I’d be interested to know what you really think, Dr Aitken.’
‘So it comes back to me,’ she said, straightening her glasses on her nose. ‘I have known Patience for a long time. She’s a lovely lady, very smiley, seemingly very content. I do agree with Mr Willow that her current state is not a concern. She is fine presently. But I am also aware that she is deteriorating; her muscles are getting tighter every time I see her, her lungs are more and more prone to infections, and her breathing worries me. I feel that the trial would be worth the risk if it offers her relief in just one of these areas. So, for that reason, I am in support.’
She looked around at the five other people sitting at the table, all anxious to escape the room and its dense, constraining atmosphere.
‘Shall we take a vote?’