Life

This young woman’s fatal epilepsy story has gone viral, for the most beautiful reason

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Megan Murray
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When she opened her new desk drawer, Hari Miller discovered the story and life of a girl that she’d never meet. Since that moment, she raised over £30k to support research into the disease that took her life.

It’s the story that has taken Twitter by storm, and for good reason. Taking to the social media site on 16 January, Hari Miller explained that, when she started a new job, she inherited the desk and drawers from the person who sat there before her.

It was then that she found the order of service from the funeral of a 21 year old woman named Amelia.

“Reading it I learned she had a rare form of epilepsy that’s resistant to drugs,” explained Miller. “Those people are much more prone to sudden death during an episode. Sadly, that happened to Amelia. I’m feeling quite tender at the moment so it hit me right in the guts and I had a cry in the loo.”

Miller noticed that, in the footnote of the order of service, Amelia’s parents had included the details of a Just Giving page for her, calling for donations to the Epilepsy Society which Amelia found a lot of support in. Miller donated, and wrote “a little note explaining this little story”. The next day she woke to an email from Amelia’s parents.

As Miller writes: “They told me what 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.

“I know we hate threads. I’m not sorry. Donate your organs. Be brave, and be fucking kind to each other.”

Miller’s simple act of kindness could have ended there, but as her thread continued to garner attention on social media, more and more people became invested in Amelia’s story.

Within the next few days, Twitter users were so keen to help that Miller asked for Amelia’s mum’s permission to share her Just Giving page, and details on how to donate your brain to medical science, which Amelia had done herself.

The page gives a little more information on the type of epilepsy that Amelia had.

“Around her 16th birthday she developed epilepsy in the form Petit Mal seizures or temporary absences from her surrounding situation,” it reads.

“Supported by her dedicated medical team, she began a journey to tackle her condition using various combinations of prescribed drugs to control her fits, but to no avail. Even though these powerful drugs affected her energy levels it didn’t deter her from trying to lead a normal life. Just over a year ago she started experiencing Grand Mal seizures where she lost consciousness.”

Over the next week Amelia’s story continued to spread with donations reaching tens of thousands, and both Hari and Amelia’s parents were invited on BBC Breakfast to talk about how this strange turn of events had brought people together to support this cause.

Responding to the public’s interest in the story, Miller tweeted: “What a strange and wonderful few days. Thank you to Debbie and Hamish [Amelia’s parents]…it’s a privilege to be a small part of Amelia’s story. And, thank you to Louise Minchin, Dan Walker, and the rest of the BBC team for helping us tell it.”

Charity Young Epilepsy also tweeted: “The discovery of Amelia’s story moved Hari to share it with the world and the response has been humbling.

“We’ve seen thousands compelled to donate, spreading awareness and understanding of SUDEP. It is important to continue this vital research to stop the loss of other lives.”

Elsewhere, Hamish, Amelia’s dad, has said: “Hi Hari, and indeed everyone who has read your lovely tweet and donated to her fund. You are all lovely and so kind. Debbie and I and the Epilepsy Society want to thank you for your support. Amelia was such a beautiful girl. We miss her terribly.”

Now, many people whose lives have been touched by epilepsy have not only donated to the page but have been sharing their own stories, too. For example, one social media user wrote: “Hari, you are a star. Love to you and your family Hamish. Amelia is beautiful. We lost our daughter Becky to SUDEP in 2004. We have met many families who have lost loved ones to epilepsy through @SudepAction which has really helped us.”

Another tweeted: “Crying because a) it’s my eldest son’s 30th birthday today and I’m thinking of all the parents who don’t have their beautiful children to celebrate with and b) I’m remembering my dear friend Alister Wilson who died suddenly after an epileptic seizure. Sending love to you all.”

“Im so so sorry. I can’t quite gather the right words but as a parent with a child with epilepsy I can only express my gratitude for your massive contribution. I’m so, so sorry for your terrible loss,” wrote another. 

Although sadly none of these wonderful actions will bring Amelia back, it’s encouraging to see a tiny bit of light coming out of such a dark situation. You can donate to the Just Giving page here, or learn more about Epilepsy Society here

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Images: Just Giving

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Megan Murray

Megan Murray is a digital journalist for stylist.co.uk, who enjoys writing about London happenings, beautiful places, delicious morsels and generally spreading sparkle wherever she can.

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