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another—up to fifty a day—inhaling compulsively until they burned down to her fingers. Then, if there weren’t another dozen full packets ready in the cupboard (something she’d check obsessively), she’d freak out about that too.
    Other times, she’d get utterly depressed, despairing at what was happening to her, frightened about the future, paranoid that I was going to leave. But I didn’t. She was my mother, my whole world.
    And I felt so guilty. She’d been struggling for years and I’d never twigged what was really going on, never realized. So I learned how to cope: to stick to a routine, to keep episodes of all her soaps recorded just in case, to buy cigarettes in bulk and leave ashtrays everywhere. To stop her burning her fingers I even bought her an old-fashioned cigarette holder that she absolutely adored—she said she felt like Audrey Hepburn.
    Nana and Sarah helped as much as they could, worried about me dropping out of Sixth Form, losing touch with my friends, my future … Nana wanted me to take the predictive test straightaway, but I wasn’t allowed—at sixteen I was too young. Plus there were other factors to consider.
    Bex bombarded me with questions: What would I do if the test was positive? Would it be worth going to uni, or learning to drive? Should I really get married? Or have kids, if they could get it too? Wouldn’t that be cruel, or irresponsible, or selfish? Endless painful, impossible questions that left me confused and sick and dizzy.
    I kept quiet after that, told Bex to, too—tried to be normal, to keep up with my friends as they started Sixth Form without me, with odd days out, phone calls, Facebook. But all they ever seemed to do was gossip about their new mates, giggle about guys or moan about their course work, and it all seemed so petty suddenly. So meaningless. It was actually a relief when they finally stopped calling.
    And besides, I had new friends—online friends from the Huntington’s Disease Youth Association. Teens who understood what I was going through, who’d lived with the disease for years, watching as it slowly sapped the independence and vitality from their loved ones day by day. Though we now realized Mum’d had symptoms for years before her diagnosis, we met people at her support group in much later stages of the disease—people whose families had deserted them because of their volatile behavior, not realizing they had HD; families torn apart by denial; parents whose children wouldn’t visit them for fear of witnessing their own future; pensioners who’d envisaged their retirements spent indulging their hobbies and grandchildren, not visiting their formerly strong, healthy spouses or adored grown-up children withered and bedridden in care homes.
    Mum was so frightened of becoming a burden like that. She couldn’t bear to imagine that someday she might need someone to spoon-feed her and wipe her bum—that wasn’t who she was . Though it pains me to say it, in a way, she was lucky.
    And for a while she was reasonably okay. The doctors prescribed medication that toned down her anger, depression and chorea, and on really good days she developed a jubilant carpe diem attitude, throwing her worries to the wind as we went swimming in the sea, boating on the river, and picnicking on the Downs. For her birthday Nana, Sarah and I even took her to Paris for cake beneath the Eiffel Tower. She was even due to start a clinical trial for a new drug, which they hoped would slow the disease’s progression.
    But then, a few weeks later, she went upstairs for something in the middle of the night, lost her balance and tumbled all the way back down, smacking her head against the wall, causing a brain hemorrhage. That was the beginning of the end. Her symptoms seemed to advance much more quickly after that. She became completely bedridden. She struggled to swallow her food. Then she developed pneumonia.
    It was awful. Nana and Sarah both did their best, coming over day