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Charity Donations Fly In As Order Of Service Found For Woman, 21, Who Died Of Epilepsy

Charity Donations Fly In As Order Of Service Found For Woman, 21, Who Died Of Epilepsy

Hundreds of people have been moved by Amelia and her powerful story.

Joanna Freedman

Joanna Freedman

When Amelia Roberts passed away from epilepsy aged just 21, she already left a huge legacy among those who knew and loved her.

However, in a remarkable twist of fate, people all around the world have now been left touched by her life, and are donating thousands of pounds to charity between them in her memory.

Amelia's story came to light after a complete stranger, Hari Miller, found her funeral order of service in her new desk draw at work, and felt compelled to share it on Twitter.

And the viral social media storm that followed - coincidentally on the one year anniversary of her funeral - has since been described as "incredible," and downright "overwhelming" by her family.

Hari's Twitter thread read: "I inherited a desk and drawers in my new job but didn't have the key until today. When I opened it the stuff from the previous person was still inside it. Shuffling through I stumbled across the order of service for a 21yo girl, Amelia.

"Reading it I learned she had a rare form of epilepsy that's resistant to drugs. Those people are much more prone to sudden death during an episode. Sadly that happened to Amelia."

Hari then revealed that she'd been so touched by Amelia's story that she had to excuse herself to go and cry in the toilet.

She later donated to Amelia's family's JustGiving page, and was contacted by her parents after doing so.

In her post, she went on: "They told me that Amelia had made quite an impression in her short life. She'd arranged to donate her brain to epilepsy research when she died. And she had over 600 mourners turn up and spill out of the church at her funeral."

Since Hari sharing Amelia's story on Friday night, a whopping 8,600 people have retweeted it onto their own timelines, it has received over 31,000 'likes', and the family's JustGiving has been inundated with donations and messages of support.

While the Roberts family set themselves a target to break £100,000 of donations by the end of 2020, (they already had £80,000), the viral tweet meant that they had managed to do so in a matter of days - and the donations just keep coming.

One JustGiving donation reads: "Amelia's story touches close to home, my daughter has epilepsy, it's a constant worry. Such a courageous young lady. An amazing act for research. X".

While another strikes a similar chord, writing: "I have Petit Mal seizures also, so Amelia and her families story has really touched me. Thankyou for highlighting this awful condition & raising funds for valuable research."

Amelia was just 21 when she passed away (
Lily Roberts)

Speaking to Tyla, Amelia's eldest sister, Lily Roberts, 24, opened up on her family's shock and delight at all the contributions and heartfelt messages they'd received.

While Lily doesn't use Twitter much herself, she was alerted to Hari's thread thanks to her cousin, and before she knew it realised loads of her friends had spotted it on their timelines, too.

"It was so strange seeing the reactions from the public, we've had donations from all over the world, which is just incredible," she said. "It's been very overwhelming seeing how many people have been moved by her story."

Lily added: "It's certainly very spooky it happened exactly a year on after her funeral anniversary too. I'd like to think it was her doing, that she just wanted a bit more attention on this day, and, well, it certainly worked!"

Amelia initially suffered Petit Mal seizures from the age of 16 as a result of her epilepsy, but in the last year of her life these developed into a much more serious form of Grand Mal seizure, which tragically ended up being fatal.

Amelia with her sisters Kitty and Lily and her mother Debbie (
Lily Roberts)

"Amelia and I were really close," Lily went on. "She was only two years younger than me so we had a bond over all the normal things sisters would. We'd talk about boys and gossip and always argue about her stealing my clothes.

"I was always completely in awe of how well she dealt with everything, it definitely taught me to be stronger and more resilient when struggling with anything, as I'd always see how amazing she was with dealing with her demons."

Recalling how these seizures would affect her sister's life, Lily said: "She would collapse on the floor, often seriously hurting herself. She broke her jaw after a fit once which was a serious wake up call at how serious the epilepsy was getting.

"A few times she'd have a fit in the company of friends who could catch her, but this is when we started to realise that her being resistant to the drugs was very dangerous.

Lily and her sister Amelia were incredibly close (
Lily Roberts)

"She never let any of this get to her though, she'd always power on and never ever complained about the restraints that epilepsy brought onto her life.

"She was such a positive spirit and it was truly inspiring to watch her power through life, not letting it stop her to do any of the things she wanted, like going to university or going to Borneo on a volunteering scheme."

Taking to Twitter once he spotted the thread, Amelia's father Hamish Roberts wrote: "What a day! I am simply blown away by you Hari and Twitter."

And as he appeared on BBC Breakfast alongside his wife, Debbie, in the wake of the social media outpouring, the pair further described where all the donations would be going.

Hamish said: "Amelia was the most courageous girl, she was brave and tenacious. She said: 'I have epilepsy but it doesn't have me'.

"We've worked with the epilepsy society - they're the people who supported Amelia when she was first diagnosed - and they're amazing people. They're doing world class research and genomics funding, which is to get money to help with certain people who are not responding to their drugs.

"A lot of people don't understand epilepsy and the statistics. There are three new diagnoses a day and three people die a day from epilepsy. There's about 600,000 people in the UK, and had Amelia been through this genomics programme she could still be here.

"It's very difficult to get right drug dosage for the sufferer. This £110,000 - and more, we hope - will help fund research into genomics funding."

Hamish and Debbie are also set to appear on ITV News at 6pm tonight to speak more about their daughter's life and their fundraising.

If you want to read more about Amelia's story or donate to the Epilepsy Society's vital research via her JustGiving page then you can do so here.

Featured Image Credit: Lily Roberts

Topics: Real, Health