Alana’s Epilepsy Mission

17/03/2026

Some seizures can take a life. Others can change one forever. 💜

Status epilepticus and tonic clonic seizures can be life-threatening. As a parent, you live in a constant space of preparing for the worst… while desperately hoping for the best.

With Non-Epileptic Attack Disorder, the same immediate risk to life may not always be there — but the trauma is.

The fear is real.
The impact is lasting.
The unpredictability is exhausting.

Non-epileptic seizures are still incredibly debilitating and frightening. They stop life in its tracks.

In summer 2024, Alana experienced her most severe regression — enduring constant non-epileptic seizures for 6 weeks straight.
Six weeks of being unable to function.
Six weeks of needing intensive, round-the-clock care.

This is the reality for so many families.

Awareness matters. Understanding matters. Compassion matters.

💜 Please take a moment to learn, to listen, and to support.

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17/03/2026

Part 2: Navigating a new diagnosis 💭

Learning to understand your body and its new limits isn’t easy — especially in those first moments after a diagnosis 💜

For children like Alana, this stage can shape everything. It can be the difference between building confidence or living with crippling anxiety 😞

That’s why awareness, support, and understanding matter so much. The way we respond, the way we listen, and the way we show up can truly change a child’s future 💜

17/03/2026

💜 Real conversations. Real experiences. Real impact. 💜

As promised, we’ve started recording some honest conversations between Alana and I about her diagnosis and how it has impacted her life.

These videos will be a little longer than usual, but they’re important. They’re real. And they’re Alana’s truth.

✨ We hope they help others feel seen and validated
✨ We hope they raise awareness about seizures and their impact
✨ And most importantly, we hope Alana’s voice is truly heard

Because living with seizures as a child isn’t what many people assume… it’s something that deserves to be understood 💜

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17/03/2026

✨ Aims of Alana’s Epilepsy Mission ✨

We are on a mission to create real change for children living with epilepsy and seizure disorders 💜

🌟 Raise awareness about complex seizure disorders in children
🌟 Share lived experiences in schools and with supporting agencies to ensure families feel seen, heard, and fully supported
🌟 Challenge communities and local authorities to make events inclusive and safe for all
🌟 Launch a hospital-based project to support parents and caregivers during urgent care situations

This is about more than awareness — it’s about action, inclusion, and protecting our children.

Together, we can build a safer, more understanding world 💜

MakeADifference

16/03/2026

📣 Why do we need to raise our voices? 👇

Because misinformation is loud — and it needs to be corrected ‼️

Stigma and misinformation are dangerous narratives. When influential voices spread false claims about health and vaccines, it doesn’t just create confusion — it creates real risk.

We are now seeing diseases re-emerge that should have remained controlled. Conspiracy theories and misinformation are leading some people to avoid vaccines, allowing illnesses to circulate again.

For many children this is concerning. For medically vulnerable children like Alana, it can be life-threatening.

If Alana were to catch a serious illness, her body may have far less chance of fighting it. That’s the reality many families like ours live with every day.

This is why awareness matters.
This is why education matters.
And this is why we will keep raising our voices.

Stigma, misinformation and ignorance put lives at risk — and our children deserve better.

16/03/2026

🧠 Epilepsy stigma is still a huge challenge for people living with the condition. Many harmful myths and misconceptions continue to circulate — and they can affect understanding, safety, and inclusion.

Let’s break some of the most common myths 👇

✨ “Epilepsy is spiritual possession, witchcraft, or a curse.”
No. Epilepsy is a neurological condition caused by abnormal electrical activity in the brain. Historically it was misunderstood in many cultures, but modern medicine confirms it is a physical brain disorder.

🧠 “Epilepsy is a mental illness.”
No. Epilepsy is a chronic neurological disorder, not a mental health condition.

💊 “Medication cures epilepsy.”
Medication does not cure epilepsy, but it can help control seizures in around 7 out of 10 people.

💉 “Vaccines cause epilepsy.”
There is no scientific evidence linking routine childhood vaccines (such as MMR or DTaP) to the development of epilepsy.

👅 “You can swallow your tongue during a seizure.”
This is a myth. It is physically impossible to swallow your tongue because it is attached to the floor of the mouth.

✋ “You should restrain someone having a seizure.”
Never restrain someone during a seizure. This can cause injury to both of you.

👶 “People are born epileptic.”
Epilepsy can sometimes be genetic or linked to pregnancy complications, but it can also develop later in life due to brain injury, infection, or unknown causes.

⚡ “It’s just seizures.”
A seizure is a single event. Epilepsy is a chronic condition defined by recurrent, unprovoked seizures.

Education breaks stigma.
Understanding saves lives.

💜 Alana’s Epilepsy Mission is committed to raising awareness, challenging myths, and creating a safer, more informed world for people living with epilepsy.

15/03/2026

To all the mums who wake up every day not knowing how they’ll do it… but somehow they still do. 💜

The strength, love, and resilience you show every single day does not go unnoticed.

To the mums grieving a child no longer in their arms, your love for your child and their love for you lives on.

From all of us at Alana’s Epilepsy Mission — Happy Mother’s Day.

14/03/2026

💜 Why Alana’s Epilepsy Mission Matters 💜

Alana’s Epilepsy Mission was created from love, determination, and a powerful belief that every child living with epilepsy deserves to feel safe, understood, and included.

Epilepsy is one of the most common neurological conditions in children, yet awareness and understanding are still far too limited. For many families, it means navigating unpredictable seizures, hospital visits, medication changes, and the emotional toll that comes with living with a complex condition.

Through Alana’s Epilepsy Mission, we are working to:
✨ Raise awareness about complex seizure disorders
✨ Advocate for better understanding in schools and communities
✨ Support families who may feel isolated in their journey
✨ Encourage safer and more inclusive environments for children with epilepsy
✨ Push for greater recognition and support for epilepsy research and care

This mission is about turning one child’s journey into something that helps many others. By sharing information, starting conversations, and challenging misconceptions, we hope to build a community where children with epilepsy are supported to thrive.

Every conversation, every fact shared, and every bit of awareness helps move us closer to that goal.

💜 Because every child deserves to feel safe.
💜 Because every family deserves support.
💜 Because awareness can save lives.

InvisibleDisability InclusionMatters

13/03/2026

🧠Cluster seizures — sometimes called acute repetitive seizures — happen when two or more seizures occur within a 24-hour period, and they are different from a person’s usual seizure pattern.

🧠 These seizures can come in a series with only short recovery periods between them, which can be incredibly frightening for both the person experiencing them and those around them.

👉🏻Without the right support and management, seizure clusters can escalate into a medical emergency, which is why awareness and education are so important.

👉🏻Understanding the signs helps people act quickly and safely.

💜 At Alana’s Epilepsy Mission, we are working to raise awareness, improve understanding, and help create safer environments for children living with complex seizure disorders.

InvisibleDisability EpilepsySupport

12/03/2026

12/03/2026

🧠 Epilepsy Research Matters 💜

Epilepsy research in the UK has historically been significantly underfunded.

Between 2018–2020, only around £21–£28 per person per year was invested into epilepsy research. When compared to funding for other neurological conditions, epilepsy continues to receive only a fraction of the support needed.

In 2024, the UK government announced a £45 million investment to support new research and early-career scientists working to improve treatments and outcomes. While this is a positive step forward, it highlights just how much more progress is still needed.

For the over 600,000 people living with epilepsy in the UK, research is vital. It means better treatments, improved understanding of seizures, and hope for the future.

💜 Through Alana’s Epilepsy Mission, we are committed to raising awareness, sharing knowledge, and advocating for better support and investment in epilepsy research.

Every conversation, every share, and every voice helps push for change.

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