• English
  • French
  • German
  • Italian
  • Portuguese
  • Spanish
  • Swedish
Back to Firefly Blog

Epilepsy Awareness Month

Epilepsy Awareness Month

November is Epilepsy Awareness Month. Epilepsy is a big part of our family life. I have 3 children, Florence who is 5 months old, a step daughter who is 5 and Ethan who is 8.

Ethan our eldest has epilepsy. Not just any epilepsy, hard to control epilepsy.

Ethan had his first seizure when he was just four days old. It was the most terrifying moment of my life. I can still picture every second of those 3 minutes. Holding my tiny baby and him jerking and staring at me will haunt me forever. This was just the start of our 8-year journey so far.

Epilepsy controls our life. It never stops for our poor son. We were told by our epilepsy nurse that "children with epilepsy are always in a state of epilepsy.

They are either having a seizure, building up to a seizure or recovering from a seizure". We have found this to be so true!

We don't ever know when a seizure will appear and we can never predict where we will be when it happens.

Most of the time people won’t even recognise Ethan is having a seizure as he doesn't present with his seizures like you would think.

Ethan’s seizures present in the following ways; increased heart rate with gasping for air and arm jerking, staring into space (absent seizure), crying with increased heart rate and eye flickers.

When you know Ethan well you can tell when he's having a seizure.

We constantly have to keep an eye on him as it's important to help get the seizure under control as soon as possible. Ethan has a VNS is place which helps with seizure control and we also use midazolam which is a rescue med.

As a family we spend lots of time in hospital. It's like a day out for us! Dakota even got dressed up as wonder woman! We are very used to this but each time is still hard and emotionally draining on us all.

Never knowing whether we will leave the hospital with Ethan is a thought that never leaves you.

We don't let epilepsy stop our lives though even though it controls it! We still have many adventures with Ethan, although some of those plans often have to be cancelled or changed due to a seizure. We live life fully as we know just how precious having Ethan is.

Unfortunately, one seizure could take him and I do not want to live with any regrets that we didn't give him a life full of love and fun.


Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

Naomi Aldridge

Meet Our Blogger

I am a special needs blogger who writes about mine and my son's special needs journey. I love being a mummy to Ethan and I want to share the highs and lows with those around us to raise awareness of life with a disabled child.

View Naomi’s Profile

Become a Firefly Blogger

Would you like to write for Firefly? Join our blogger network of parents, therapists and professionals.

Get In Touch

Become a subscriber today

Join over 40,000 subscribers to our weekly newsletter with insightful articles just when you need them.

Join Mailing List

By using our site you agree to our use of cookies. Click here for more info.

Accept & Close

No Interest if paid in full in 4 months on

Purchases on £99+

UK Customers only. Subject to credit approval. See terms below

Paypal Credit

Pay now or pay over time with PayPal Credit. Just use PayPal Credit in PayPal checkout.

Subject to credit approval.

Purchases of £99+:

No Interest if paid in full in 4 months on purchases of £99 or more.

  • A minimum monthly payment is required and may or may not pay off the promotional purchase by the end of the 4-month period.
  • No interest will be charged on the purchase if you pay it off in full within 4 months. If you do not, interest will be charged on the purchase from the purchase date at the Purchase APR applicable to your account.
  • Any remaining balance due after the 4-month promotional period or any transactions under £99 will be charged interest at 19.9% p.a. (variable).

Purchases of £98.99 or less:

Buy now and pay over time with PayPal Credit when you spend £98.99 or less.

  • If you pay your balance in full each month by the payment due date that is on your statement, you can avoid paying interest.
  • Or, make minimum monthly payments, or any additional amount of your choosing, until you've paid off your balance according to your standard account terms. Please note, interest charges may apply.
  • We'll send you email reminders when your payments are due. You can also keep track of your account and view your statements online at any time.

About PayPal Credit

  • PayPal Credit is a reusable credit line available on purchases at thousands of stores that accept PayPal. It's also available for purchases on eBay and exclusively at thousands of other online stores. Plus, it comes with the same security and flexibility you trust from PayPal.
  • In order to maintain the 0% offer, you need to keep up monthly repayments and stay within your credit limit. Credit subject to status. Terms and conditions apply. UK residents only.

Please wait...