26 Miles In March Fundraiser For ‘Young Epilepsy’ 💜

Our Story ~

In early 2017, after an extremely traumatic period spent hospitalised in the high dependency unit, our daughter Heidi was diagnosed with PCDH19 Epilepsy at just eight months old.

PCDH19 is a rare, genetic form of epilepsy, often referred to as clustering epilepsy. It is characterised by the sudden onset of seizure in early childhood. These seizure clusters can occur in groups over hours, days, or, even weeks. They are then followed by long seizure-free periods—our happy periods. Alongside epilepsy, PCDH19 is also associated with cognitive and physiological disorders, affecting around 70% of patients.

While we were still trying to process this lifechanging diagnosis and come to terms with a future we had never imagined, we were also told that this condition is known to be drugresistant. This meant that the likelihood of achieving seizure control was extremely low. After multiple medication trials and heartbreaking setbacks, Heidi was eventually discharged from hospital.

To this day, we continue the search for a treatment that works well for Heidi and offers her the seizure freedom we so desperately wish for her.

We will be forever thankful to Heidi’s specialists and consultants for their continued care, Leeds Teaching Hospitals that have been a second home to us and her community nurse, who has been both our physical and emotional support network throughout the past few years.

Fast forward to 2026, and as a family, we could not be more grateful. The past nine years have been filled with turbulence and many struggles, but they have also been filled with joy, good health, and so much happiness. We have learned to appreciate the mundane moments and peace, and that while we cannot always choose what happens to us in life, we can choose our attitude towards it.

Heidi is our inspiration. Every challenge, battle, and setback she has faced has been met with incredible grace and resilience. We are endlessly proud of her, and we will continue this journey together—every step of the way.

It means the world to us to be able to give something back by supporting other families, children, and young people along the way. Always.


#TeamPossible

#YoungEpilepsy

#PurpleDay

Thank you so much for your support and kind donations, all our love,

Heidi and Family x