Language
  • English
  • French
  • German
  • Italian
  • Portuguese
  • Spanish
  • Swedish

Insurance Funding Request

Did you know Firefly products may be funded by your insurance?

Learn More
Back to Firefly Blog

Complex epilepsy and our family

Complex epilepsy and our family

When I first heard my 18 month old had ‘just’ epilepsy and that tests had confirmed she did not have other potentially more scary conditions, I tried to think positively. I envisaged a few seizures here or there, but it essentially being a common, manageable condition that many people live with.

It hasn’t taken that path for us, unfortunately. My little girl (Taz, a pseudonym) who is now 8, has a particularly complex epilepsy that dominates our family life.

She has a condition called Lennox Gastuat Syndrome. Our gorgeous girl has multiple seizure types, tonic clonics, atonic (drop seizures), focal seizures, absence seizures, tonic seizures, myoclonic seizures and atypical absence seizures. It’s rather a long list.

Watching your child go through this is incredibly painful.

I now truly understand the meaning of the word heartache, and how physical that can be.

We have had many, many ambulance trips and hospital admissions. Calling 999 is now routine for us, no longer newsworthy. If an ambulance is in our street, most of our neighbours will assume it’s for Taz.   Complex epilepsy like this is a terrifying condition to live with.

It’s a beast that can jump out of the shadows at any time.

As someone with an existing anxiety disorder and who jumps at a toaster popping up, it’s a tough path to tread. That said, we have lots of happy times and in the course of living with this shapeshifting illness we have encountered so much kindness and support.

 When Taz is not having seizures she loves to play, ride her unicorn, bounce, run and go swimming.

Taz has been through about 10 different drugs and currently takes 4, she has a vagus nerve stimulator and is on a medical ketogenic diet (have a google of those last two if you want to know more). Nothing works to stop her seizures.

One glimmer of hope is medical cannabis.

Three children in the UK have a prescription for this after it was legalised back in 2018 but there is currently major issues with doctors prescribing it. Please do spend a moment looking at https://endourpain.org to find out more.

I have to be a firm advocate for my daughter; in hospital when it comes to drugs that are being given, at school regarding her care and to social care to ensure we have the support she needs. It’s exhausting but I realise my privilege in being able to do this.

Taz’s resilience is incredible and watching her bounce back after episodes and get back on her unicorn astounds me every time - she’s just magic.

For more information on epilepsy visit: Home - Epilepsy Action

Firefly Blog

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

Sharon Foxwell

Meet Our Blogger

I'm Sharon, I have a daughter with epilepsy and a severe learning disability. I blog about our livewire life.

View Sharon’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 6 months on

Purchases on $99+

US 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 6 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 6 month period.
  • No interest will be charged on the purchase if you pay it off in full within 6 months. If you do not, interest will be charged on the purchase from the purchase date at the Purchase APR applicable to your account.
  • For New Accounts: Variable Purchase APR is 25.49%. The APR is accurate as of 6/1/2018 and will vary with the market based on the Prime Rate (as defined in your credit card agreement). Minimum interest charge is $2.00.
  • Individual items that are less than $99 qualify for special financing when combined for a total of $99 or more in a single transaction.
  • Multiple separate transactions of less than $99 per transaction cannot be combined to meet the minimum purchase amount.

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.
  • If approved, we start you off with a minimum credit line of at least $250. See FAQs for more info.
  • For New Accounts: Variable Purchase APR is 25.49%. The APR is accurate as of 6/1/2018 and will vary with the market based on the Prime Rate (as defined in your credit card agreement). Minimum interest charge is $2.00. See Terms and Conditions tab for more info.
  • If you miss a payment your late fee could be up to $38, even less if it's your first time. See FAQs for more info.

Please wait...