'My daughter's death took me to the darkest place, but I've learned it's possible to come back'

No one wants to talk about a dead child, Sheila Appiah says with unnerving calm as she stares into my eyes. “It’s any parent’s worst nightmare. I think it makes them frightened that it might happen to them,” she explains, with a rueful smile.

“People ask questions: How did she get the leukaemia? Did I not feed her the right food? Look, we had a healthy diet. We ate lots of fruits and vegetables. Imogin still got cancer.”

We are drinking coffee in the cosy sitting room of the Croydon flat Appiah, now 47, moved into with her only child in 2004. In a telltale sign that this is a family home, the corner shelves display happy snaps of mother and daughter together: the bright eyes, high cheekbones and mischievous smiles mark a striking resemblance between the two.

More unusually, next to these are photos of Imogin with her doctors, Appiah with David Cameron, Imogin with Katie Price, and a handwritten note from the Duchess of York, addressed to Appiah, expressing sympathy at the loss of her daughter.  The memories in this room are bittersweet: shortly after they settled into their first proper home, Imogin was diagnosed.

“When we moved in, she was pretty feisty, running around, climbing up the sofa, wouldn’t stay still, chatty,” Appiah recalls with a laugh. Like any toddler, “she would help with things; she’d stand on a chair to wash plates. We were so, so close.”

Imogin loved the nursery she attended in Bromley, so it puzzled her mother when she started complaining that her leg hurt. “It’s a strange thing for a two-year-old to say,” Appiah says, shaking her head. “For a few days, she wouldn’t say it, but then it would come back: Mummy! My leg!” She took Imogin to the GP, who suspected growing pains. Over the next six months, Imogin continued to complain of leg pain and began losing weight.

Appiah persisted in scheduling appointments, but a series of doctors failed to identify the problem. “I am angry now with myself and also with the NHS because they didn’t chase it up fast enough; they assumed that she had growing pains or sickle cell. At one point someone told me she was just ‘seeking attention’.”

At a medical appointment of her own, Appiah’s GP asked her if something was wrong. Appiah explained Imogin’s mysterious pains and the GP launched an investigation, which led to blood tests.  Appiah was at work and Imogin was with her grandmother when the news came. On her lunch break, Appiah discovered six missed calls. “They said: ‘You have to come to the hospital immediately. It’s about your daughter’s abnormal blood counts.’”

Imogin was diagnosed with acute lymphoblastic leukaemia (ALL) at the age of three, in 2006. “At the hospital there were about 10 doctors asking me questions about the process of going from hospital to hospital. I asked: ‘Is it something serious?’ They said: ‘It is’. I asked: ‘Is it treatable’? And they said: ‘It is’.”

Imogin began treatment immediately – she seemed happy that people were finally listening to her – and Appiah quickly realised that being a carer was going to be a full-time role, so she left her job with a beauty company. At the time of Imogin’s diagnosis, Appiah was given an information pack with a list of potentially helpful charities. Among these was Leukaemia Care, one of The Telegraph’s three chosen charities for this year’s Christmas appeal (the others are Wooden Spoon and The Silver Line).

Appiah rang Leukaemia Care’s helpline from the point of diagnosis until well after the end of her daughter’s life. “Sometimes I’d call them as a means of support,” she says, ”when things got really rough, when her medications were really powerful, and the chemo made her so unwell.” She rang when she had panic attacks; an NHS psychologist had told her that these were likely, and that she should breathe into a brown paper bag, but Appiah found speaking to a person more soothing.

With a laugh, Appiah notes that she’d ring the helpline at other times, too: “Sometimes I’d be out with Imogin, and she’d be in the pram, being naughty, and all of my patience was going down the drain, and I’d phone Leukaemia Care’s nurses, and say: ‘Look, I’m feeling so depressed, my daughter’s shouting, I don’t know what to do!’

“But I might also say: ‘Nurse, I’m actually feeling good today.’”

Appiah says the support of an independent person was invaluable: “When your child is so ill, you need to speak to someone who doesn’t know your name – you need an outsider you can unload to. I didn’t want anyone thinking: Here Sheila comes again!

“You become self-conscious about your situation and don’t want to be a burden on your friends and family. With the helpline, you won’t be judged: they just listen. You get it out of your system and then go do the shopping at Sainsbury’s.”

When Imogin was well, she’d go to school. But she also spent weeks at a time in isolation in St George’s Hospital, with her mother by her side. Once, she had a bad reaction to a medication and went into cardiac arrest.  “She was crying and saying, ‘Please, please!’ and they were giving her all sorts of medicine. The doctors were battling to keep her stable and I dived into the bed with her and told her: You’re going to be OK. I lay down with her and I started singing with her. And then, once she stabilised, she said: ‘Now can I watch High School Musical?’"

Appiah shakes her head, laughing: “That’s what she was like: ‘I was on the door of death, but I have something else planned. I want to watch my video and none of you are going to stop me!’ ”

Charities sent the pair to Disneyland Paris twice. The first time was fantastic, says Appiah, the second time Imogin was in and out of consciousness. “But they said we should go, to make memories,” Appiah explains. Imogin got to be a celebrity for a day and went to Hamleys in a limousine to get anything she wanted.

Another charity sent Appiah and  Imogin to Wales, just after doctors estimated that the little girl had just six months to live. And when they returned to London, Appiah noted a marked slowness in her daughter. The nurses and doctors told her that Imogin might go at any time, warning that she might bleed to death. Her consultant said: “It’s different for every child and we just don’t know.”

Having had chemotherapy, Imogin and her doctors launched a campaign to find a bone-marrow transplant. Because of the desperate shortage of donors of black and ethnic minority origin, Imogin had a one in 100,000 chance of finding a match, compared with around one in five, had she been white. One of the great strengths of Leukaemia Care as a charity is that it acts as a leukaemia network, sharing contacts with other charities with its clients to help them address specific needs. Working with the Afro-Caribbean Leukaemia Trust (ACLT), Imogin’s doctors eventually found a three-month-old US donor, whose mother had agreed to donate the stem cells from his umbilical cord (Shelia would love to find them: “That boy would be around 10 years old now,” she muses).

Imogin had the cells transplanted into her bloodstream at Royal Marsden Hospital, in Sutton, where they found their way to her bone marrow. This extended her life for three months, her mother says.

Still, Imogin Appiah died in her mother’s arms on Jan 23, 2010. In the end, Imogin called her mother to her bed at 1am, asking for juice. Appiah ran in. “I lay in the bed with her. I said: ‘I love you so much. Do you know what’s happening?’ And she said to me: ‘I know.’ She was extremely intelligent. I said: ‘Are you scared?’ And she said: ‘No.’ I said: ‘You go to the angels.’ And then she just went a little bit limp. I lifted my daughter up, and then I put her down. She breathed a few breaths and then stopped. Appiah remembers jumping high in the air and crying out.

“My neighbour’s son heard me scream. It’s a scream you should never hear, it was the sound of an animal. But there’s nothing greater than the love for your child: it’s primitive. All you think about is your child, how you can enrich their life.”

Appiah would like to see better mental health support for grieving parents. “When you lose a child, you need attention afterwards. You need emotional support,” she explains, but you also need understanding from your employer and wider community.

“In the beginning, I used to sit on the Tube platform, and I felt an urge to walk towards the tracks. It was physical. But my love for Imogin, and for her positive message, stopped me.”

Eventually, Appiah returned to the beauty world, finding a fulfilling job at Whole Foods: “I see it like this: now, my job is my kids.” She has also, with the help of Leukaemia Care, discovered a love of writing: she proudly notes that the charity has published her essay on losing a child, on its website and in its magazine.

But she wishes she’d had more flexibility immediately after her daughter’s death. “You need time to do your second job, which is grieving; you’re just not going to be as productive. If you’re suffering and grieving, you shouldn’t lose your job.” She says mourning parents need support, which could mean counselling, but it might also be financial support or even drawing classes.

Appiah says she’d been wondering what she should do to mark the 10th anniversary of her daughter’s death in January: should she go away somewhere?  But, she says: “This is the right thing: raising awareness about leukaemia so doctors and families are thinking about it, and ruling it out.” With a warm smile, she adds: “I really want people to know that this is a comeback story, too. I’m coming back from the darkest place, but through my work with Leukaemia Care, I’m contributing to the bigger picture.”

Clearly, this work helps her maintain a connection with her daughter. “We wanted a bone marrow transplant and couldn’t find anyone. So when she was about five or six, Imogin started campaigning for the Afro-Caribbean Leukaemia Trust.” She would speak with her mother at events, encouraging people to go on the international bone marrow register.

“She’d stand at the microphone and say: ‘Please give blood, please join the bone marrow donor list.’ I remember once, just before she was going to die, she was standing and making a speech. I said: ‘Imogin, this is your moment.’ My daughter raised awareness.”

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