Alana’s Epilepsy Mission

Alana’s Epilepsy Mission Follow Alana’s journey raising awareness about seizures and all the many forms and symptoms. Epilepsy⚡️NEAD 🐐 Neurological 🧠 Devon 🇬🇧

08/09/2026

A snapshot in time that shows epilepsy in one photo.

Sometimes, the floor becomes your best friend.

When there’s a risk of falling, Mum’s cooking dinner, and your body just isn’t cooperating, the kitchen floor becomes your safety net.

After a day of seizures.
After cluster seizures.
After feeling unwell and exhausted.

This is what our evening looks like.

And I know we’re not alone in this.

For so many families living with epilepsy, this isn’t unusual. It isn’t weird. It isn’t abnormal.

It’s just life with seizures.

The moments that don’t make it onto the highlight reel. The reality behind the diagnosis. The ordinary moments that have become part of our everyday.

This is epilepsy. This is our normal. 💜

07/09/2026

🚨 THIS PETITION NEEDS YOUR SUPPORT. 🚨

Click on the link 👉🏻: https://c.org/BnbMfHSf4X

When someone is having a seizure, the response they receive can make a life-changing difference.

That’s why I’ve created a petition calling for fully comprehensive epilepsy and seizure awareness training for paramedics.

Epilepsy is complex. Not every seizure looks like a stereotypical tonic-clonic seizure. Some seizures are subtle, non-convulsive, prolonged, or present in ways that can be incredibly difficult to recognise — and misunderstanding what is happening can have serious consequences.

This isn’t about blaming paramedics. It’s about making sure they have the knowledge, confidence and training they need to recognise seizures, understand epilepsy and provide the safest possible care when families are at their most vulnerable.

💜 If you haven’t signed yet, please click the link and add your name.

And please don’t stop there — SHARE this petition. Send it to your friends, family, colleagues, local groups and anyone who believes people living with epilepsy deserve better.

Every signature matters. Every share helps.

Let’s make sure that when someone has a seizure, they are met with understanding, knowledge and the right response.

Please sign. Please share. Help us make this change happen. 💜

Today is about my daughter, Bella. 🤍Today marks the 2nd anniversary of losing Bella to stillbirth.And today, I stood bac...
06/09/2026

Today is about my daughter, Bella. 🤍

Today marks the 2nd anniversary of losing Bella to stillbirth.

And today, I stood back and watched Alana at her baby sister’s grave.

I watched her quietly.
I watched her remember.
And more than anything, I watched her resilience.

I felt proud of her.

Because epilepsy has an enemy that we talk about constantly: stress.

Stress can compound symptoms. It can exacerbate seizures. It can push an already fragile neurological system further than it can cope.

But here’s the thing nobody can explain away:

You cannot avoid trauma.

You cannot schedule grief for a more convenient time.
You cannot put loss on hold because you have a chronic illness.
You cannot tell life, “Not today. My child has epilepsy.”

Life keeps happening.

Good things. Bad things. Birthdays. Bereavements. Celebrations. Disappointments. Fear. Grief. Love.

I remember losing Bella and being completely broken by grief.

But somewhere underneath that grief was the medical parent in me.

I couldn’t just switch off.

While I was trying to process the loss of my baby, I was simultaneously terrified about what that trauma, that stress, that grief might do to Alana.

Because when you have a child with epilepsy, you don’t get the luxury of falling apart completely.

You grieve while monitoring.

You panic while calculating.

You carry your own heartbreak while worrying about theirs.

And perhaps one of the hardest parts has been how isolating this journey can be.

That feeling that nobody really understands what our family is carrying.

People see the photograph. They see the smile. They see the days where we manage to get out, make memories and carry on.

They don’t always see what sits underneath it.

The exhaustion.
The fear.
The grief.
The constant vigilance.
The trauma that doesn’t simply disappear because the world has moved on.

And it’s so easy to ignore what you don’t see.

It’s so easy to forget.

Not because people are necessarily unkind, but because life gets busy and, eventually, everyone else has to carry on with theirs.

But we don’t get to put ours down.

Life doesn’t stop after loss.

It doesn’t stop when your child becomes chronically unwell.

It doesn’t stop when you’re exhausted.

It doesn’t stop when your family is drowning.

What seems to stop is people’s recognition that you’re still living through it.

The world moves on.

People go back to work.
School carries on.
Appointments continue.
Messages slow down.
The flowers disappear.

But grief doesn’t follow a calendar.

And neither does epilepsy.

So today, I want to remember Bella.

Not quietly.
Not apologetically.
Not as though speaking about her makes other people uncomfortable.

She was my daughter.

She is Alana’s baby sister.

And she matters.

Today I watched my beautiful girl stand at her sister’s grave, carrying a grief that she should never have had to know.

And I thought about how much children with complex medical conditions are expected to endure.

How much families are expected to absorb.

How often we’re praised for our resilience instead of asked whether we’re okay.

So today isn’t about pretending we’re strong.

It’s about acknowledging what we’ve survived.

It’s about remembering Bella.

And it’s about being proud of the little girl who continues to find a way forward, even when life gives her every reason not to.

My beautiful Bella.
Forever my daughter.
Forever Alana’s baby sister.
Forever loved. 🤍

04/09/2026

💜 A “normal” genetic result doesn’t always mean there’s nothing to find.

Back in May, Alana underwent genetic testing as part of the ongoing investigation into her complex and polymorphic epilepsy.

Her standard genetic panel came back normal.

At first, that might sound like good news. But for us, it doesn’t provide the answers we’re looking for.

Alana experiences multiple different types of seizures, and understanding why her epilepsy presents in such a complex way is incredibly important.

Her consultant has therefore sent her results for further genomic analysis, looking beyond the standard panel to see whether there may be a genetic explanation that hasn’t yet been identified.

We’re still waiting. Still investigating. Still asking questions.

And while it can be incredibly frustrating to have so many unanswered questions, we’re hopeful that continuing to look deeper will eventually bring us closer to understanding Alana’s epilepsy — and, ultimately, finding the right treatment for her.

This is just another chapter in Alana’s diagnostic journey. 💜

Sometimes “normal” doesn’t mean “nothing is wrong.” Sometimes it simply means we haven’t found the answer yet.

03/09/2026

Differently abled and BRILLIANT 🤩

✨ A big shout-out to Leo’s Angels ✨An amazing UK charity and initiative working to drive change in innovation and techno...
02/09/2026

✨ A big shout-out to Leo’s Angels ✨

An amazing UK charity and initiative working to drive change in innovation and technology in patient care for people living with epilepsy and seizures. 💜

Their Black Tie Fundraising Gala is coming up on 19 September 2026 at Epsom Downs Racecourse, and it promises to be a very special evening.

If you’d like to support this incredible initiative, check out the gala, book your tickets and help Leo’s legacy continue to make a difference. 💫

🎟️ To book tickets, click the link below:

https://www.eventbrite.co.uk/e/leos-angels-black-tie-fundraising-gala-tickets-1992575604271

And if you’re unable to attend or support the fundraising gala, there are still ways you can help. 💜

Please head over to the Leo’s Angels page, where you’ll find their GoFundMe link. Any donation, no matter how big or small, will help support this fantastic cause and honour the memory of their beloved son, Leo. 🕊️

Every ticket, donation, conversation and share makes a difference. Together, we can raise awareness, create change and ensure Leo’s legacy continues to make an impact.

💜 Please share this post and help us spread the word.

31/08/2026

What if light made it impossible to leave the house?

For children with photosensitivity, this can be reality.

LEDs, fluorescent lights, flashing displays, neon, strobes and giant screens can cause visual disturbances, headaches, illness, seizures and exhaustion.

For Alana, photosensitivity is part of living with epilepsy. Everyday activities, buses, shops, cinemas, schools, supermarkets, fairs and excessive Christmas lights can become inaccessible.

This is about more than lighting. It’s about access to life.

When the world repeatedly makes you unwell, you avoid it. You miss out. Isolation becomes part of your life.

Accessibility isn’t only ramps, lifts and disabled toilets. It’s also being able to enter a building, board a bus, attend school, go shopping or enjoy Christmas without becoming ill.

Instead of asking, “Does this lighting look good?” we need to ask:

“Who might this exclude?”

A brighter world isn’t necessarily a more inclusive one. Children like Alana deserve to experience the world too. 💜

DisabilityAwareness

29/08/2026

What I would change if I could… 💜

I would change the way epilepsy is represented in the media.

One of the first things Alana did after her diagnosis was search for representation. She looked through TV channels, streaming platforms, films and cartoons, desperately searching for a character she could see herself in.

Someone who had epilepsy. Someone whose life reflected even a small part of what she was experiencing.

She couldn’t find one.

And that matters.

Epilepsy isn’t rare. Around 1 in 26 people will experience a seizure during their lifetime. Seizures can happen to anyone, at any age, at any time.

Yes, there are campaigns, awareness films and educational resources that tell important stories. But that isn’t the same as sitting down to watch a film or series and seeing epilepsy woven naturally into the story.

Seeing someone navigate school, friendships, relationships, dreams, challenges and everyday life while living with a neurological condition.

Because representation isn’t just about awareness.

It’s about identity.

For children and young people especially, the younger generation who are still figuring out who they are, seeing people like themselves represented in the media and in everyday life can be incredibly powerful.

It tells them: you exist, you belong, you are not alone, and your condition does not define the limits of who you can become.

Alana shouldn’t have had to search so hard to find herself.

And no child should.

Representation matters. In the stories we tell, the characters we create and the world we build around our children. 💜

25/08/2026

💜 Representation matters more than people realise.

Tonight, the Cameron Boyce Foundation shared one of our posts, and I honestly don’t think they realise just how much that means to Alana. 🥹💜

Cameron Boyce was the first person Alana was able to truly recognise herself in.

She saw someone who represented some of her struggles, her fears, her experiences with epilepsy and the things that can come with living with a condition that so often makes you feel different and alone.

She was able to look at Cameron, his epilepsy journey, his stardom, and his legacy and think, “I understand. He would understand me. He’s achieved incredible things in his lifetime.’’

And I don’t think people always understand just how powerful that is.

To recognise yourself in somebody else, especially in their struggles as well as their successes can change everything.

When you’re living with something that can make you feel isolated, misunderstood or like nobody else could possibly understand what you’re going through, finding someone who reflects even a small part of your experience can make you feel seen.

It can make you feel relevant.
It can make you feel real.
It can make you feel less alone.
It can help you feel whole. 💜

For Alana, Cameron became that person. In her isolation Cameron became her idol.

His legacy has given her someone to look up to, someone whose story she could connect with, and a reminder that epilepsy doesn’t define the limits of who you can be.

So to the Cameron Boyce Foundation — thank you. 💜

Thank you for recognising Alana’s advocacy.
Thank you for sharing our post.
And thank you for reminding her that the work she is doing matters.

You have made one very special girl extremely happy tonight 🥹💜

Cameron’s legacy continues to inspire. And tonight, it made Alana feel seen.

25/08/2026

What would I change if I could? 💜

I would change the medical industry’s understanding of what it REALLY means to live with epilepsy, especially for those living with complex, drug-resistant or multiple diagnoses.

Too often, I’ve found that medical professionals understand epilepsy through the lens of seizures and treatment.

But epilepsy is so much more than the seizure itself.

It is the impact that exists between seizures.

It is the exhaustion. The fear. The uncertainty. The medication side effects. The restrictions. The loss of independence. The inability to participate in activities that once brought joy. The disruption to education, work, friendships, family life and everyday experiences.

And it’s not just the person with epilepsy who is affected.

Parents and caregivers are navigating an entirely different life too. Immediate family members are learning how to adapt, support, advocate and cope with a diagnosis that can change everything.

When a diagnosis comes seemingly out of the blue, nothing is as it was before.

There can be a huge amount of grief involved — grieving the life you thought you and your child would have, while simultaneously trying to learn how to live this new reality.

That takes time.

And sometimes, the attitudes we encounter within healthcare can feel dismissive, nonchalant or even blasé. Not necessarily because someone doesn’t care, but because their understanding of epilepsy can be very different from the reality of living it every single day.

For some, epilepsy is about controlling seizures.

For those living with it, epilepsy is life.

It affects what you can do, where you can go, how you feel, how you sleep, how you learn, how you socialise and whether you can participate in life in the way you want to.

So if I could change one thing, I would ask for more than clinical knowledge.

I would ask for understanding, compassion and recognition of the person behind the diagnosis.

Because treating the seizures is important.

But understanding the life that exists around those seizures is just as important. 💜

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