To watch Amelia’s story being shared by millions has given us all a lift
Eleanor Steafel reports on how a bizarre coincidence has raised £120,000 for an epilepsy charity
It is easy to dismiss talk of serendipity as stuff and nonsense. Twists of fate have no place in our modern world where there is always a practical answer to the most unlikely coincidences. But in the 13 months since his 21-year-old daughter Amelia’s death, Hamish Roberts has seen coincidence become a constant companion to his grief.
The greatest came last Wednesday when Hari Miller, a communications manager, finally managed to open a desk drawer in her office that had been left locked by the previous tenant. In it, she discovered an order of service with a beautiful young girl on the front – Amelia, who having lived with epilepsy for five years, had died from Sudden Unexpected Death in Epilepsy (SUDEP) after a seizure in the bath just five days before Christmas 2018.
“I had to go to the loo to have a cry,” Hari recalls. “It was a real shock. I felt so sad for her and her parents. I read about SUDEP and thought, oh my God, she’s died of something I didn’t even know you could die of.”
Just before the first anniversary of Amelia’s funeral, Hamish had sent an email to the Epilepsy Society, which he, his wife Debbie and daughters Lily and Kitty have since been raising money for. Hamish suggested that the charity might want to tweet that a year had passed since he lost his beloved middle daughter in order to direct people towards the Just Giving page he had set up with Debbie.
Unbeknown to them both, Hamish’s email and Hari’s discovery had taken place on the same day. After finding the order of service, Hari, 43, returned to her desk and donated £20 to the Just Giving page, adding a note to explain how she came across Amelia’s story. “We read the Just Giving page every day,” Hamish, 54, says. “Those messages are really important.”
The Roberts replied instantly and, with their permission, Hari popped the story of their strange coincidence on Twitter (which, only that day, she had vowed to quit in a fit of exasperation), hoping it might encourage a few people to donate. A few hours later, her tweet had gone viral and donations began to soar. It has now been seen by four million people, and the total raised is nearing £120,000. Hari, Debbie and Hamish met for the first time on Sunday, travelling up to Manchester together for an interview with the BBC.
“It has been amazing,” Hari says of the past week, as we talk in Hamish’s City office. “This has been the ultimate exercise in luck.”
Hamish agrees. “There have been other things like this [in the past year]. We all say ‘Amelia’s at it again…’”
Whatever you want to call it, this has, Hamish says, brought a beacon of light to the end of a very difficult year. “Grief is like a stone in your shoe,” he says. “It’s always there and sometimes it hurts like hell and other times it’s just numb.”
Hamish is, as I suspect his daughter was, remarkably warm, funny and articulate. Last year, he wrote about Amelia and her condition for The Telegraph, describing how fortunate he felt “to have loved, and been loved by Amelia, for 21 years”.
He wrote of his determination to rebuild his family. Today, they are slowly beginning to heal. “It’s taken a long time,” he says. “Losing a daughter is enormous. And I’m a dad, a husband, an employee, and employer, and I’ve got to keep it all together, that’s what dads do.”
All those “key dates” in the first year since Amelia’s death have been hard. “Once you get through [her] birthday; the date she died; Christmas, which is a family time; and the date she was buried, those have been really difficult to manage.” The reactions of others, too, have proved challenging. “People come up to you wailing and you have to say it’s OK when it’s not OK. You’ve just lost your daughter.”
Grief has been “a fickle mistress”, Hamish says. It surprises you. I go to her grave and it doesn’t upset me – it’s a place of beauty. But what can get me is
‘I thought, God, she’s died of something I didn’t even know you could die of ’
missing the sound of Amelia singing in the shower, or the smell of her hair.”
Amelia was 16 when she began having what are known as petit mal seizures, during which she would “zone out”. Her consultants tried one drug after another to no avail and Amelia was classed as “drug resistant”.
By the time she died (of her 10th grand mal seizure), she had tried 15 of the 25 known drugs. Her grand mal seizures were frightening. She would drop to the floor “like a felled tree”, one time breaking her jaw in the process.
In spite of all that, she was terribly self-effacing. “She used to say: ‘I have epilepsy, it doesn’t have me’,” Hamish remembers. Remarkably, Amelia had signed up to have her brain donated to scientific research – a separate process to donating one’s organs. “I had no idea. It was an incredibly brave thing to do for a 21-year-old.”
Amelia was determined not to let her condition hold her back and secured a place at Portsmouth University. One of the most emotional moments last year came at what would have been Amelia’s graduation ceremony. She had earned enough points to be awarded a 2:1 posthumously. Hamish shows me a video. As the dean announces her name, hundreds of people rise to their feet and applaud. “The poor person who came on afterwards,” he jokes, fighting a lump in his throat.
He scrolls through old videos on his iphone, pausing on one of Amelia singing with a friend in a school concert. “For a while, I just could not do it, but I’m OK looking at them now.”
He admits that “we had hundreds of letters and I’ve still not read those properly. They’re in a box which we’ll both look at one day.” Fundraising has provided “great comfort”, so Hamish and Debbie are delighted that by chance the Just Giving page has had another boost. “They’re right on the cutting edge of working out how to tailor these drugs accordingly. Had Amelia been through that programme she could still be here.”
For Hari’s part, not only has she become aware of a condition that kills 600 people in the UK each year, but ensured others have, too. “I feel a bit embarrassed because I did a small thing,” she says of tweeting her story. She has tried to get to the bottom of who owned the drawer before her, “but I’ve stopped looking now. It doesn’t matter.”
She, Hamish and Debbie are grateful that the “whirlwind” of the last week might come to some good. Though Amelia is no longer with them, the family tries, Hamish says, to remain positive. “She didn’t suffer. She didn’t know she was going to die. That would have really p----- her off.”
He cannot deny how hard life is without her, though. “There are no words to describe how crushing this is. There were points last year when I thought I had no future. But I have always been an optimist,” he says, something that has surely been cemented further since last week. “There has to be a point to things.”
To donate to the Epilepsy Society, visit justgiving.com/fundraising/ debbieroberts21