My Story

In February 2023, our world was turned completely upside down when our youngest daughter, Lyla, began experiencing seizures. It was a terrifying moment that would mark the beginning of a journey we never expected to take. Lyla was just two years old, full of life and energy, but suddenly, epilepsy had entered our lives.

Over the past year, Lyla's epilepsy has progressed rapidly, and she now suffers from multiple seizures each day resulting in injuries. The types of seizures she suffers from are as follows: 

- Tonic-Clonic: Involves loss of consciousness and body stiffening.

- Myoclonic: Involves sudden, brief muscle jerks or twitches and occurs in clusters.

- Atonic (drop seizure): A sudden loss of muscle tone leading to Lyla collapsing or dropping to the ground.

- Absence seizure: Brief episodes of staring and unresponsiveness.

As parents, it's incredibly painful to watch our little girl endure these seizures, especially considering her age. Her seizures have impacted every aspect of her life, from her ability to play with her toys and friends to the simple joys of childhood.

Towards the end of 2023, we received heartbreaking news that Lyla has a very rare and aggressive genetic epilepsy known as Doose Syndrome. This condition is incredibly challenging to treat and control, making it all the more crucial to find the right resources and support.

Our journey has been filled with countless hospital visits, sleepless nights, and a continuous search for answers, whilst trying to manage our jobs and our eldest daughter.

For Lyla this has led to multiple EEGs, lumbar punctures, MRIs and many observations, with whole genome sequencing and other tests now completed. The future is still very much unknown and we are very early on in the journey in understanding the cause and outlook. Lyla is now on 4 types of medication twice daily to help combat and control the seizures above but throughout all she has been a little warrior!

During this difficult time, Young Epilepsy have been one of the charities that has provided us with invaluable support, guidance, and a sense of community during our darkest days.

To express our gratitude and to ensure that Young Epilepsy can continue to provide assistance to families like ours, I will be running the London Marathon in April 2024 to raise funds and awareness for childhood epilepsy.

I am also running personally for Lyla and for all the children like her who are battling epilepsy, and for the hope that one day we can find a cure.

Every donation you contribute will go directly to Young Epilepsy, providing crucial resources, research, and support for families.

Thank you for all your support. I will keep the page posted with my training journey!

Chris, Zena, Ella & Lyla x