When our son, Nathaniel, was born in 2021, we had never heard of Sturge-Weber Syndrome. This all changed when he was 3 months old. Out of nowhere, he suffered a stroke-like event and started having uncontrollable seizures. That's when SWS took over our lives.

Sturge-Weber Syndrome is a rare neurological condition that occurs in 1 in 20,000-50,000 live births as a result of a random mutation on the GNAQ gene during early pregnancy.

Each individual with SWS presents differently, but for us, for Nathaniel, it comes in the form of a large port-wine stain on the face and scalp, Epilepsy, developmental delays, hemiplegia and cerebral atrophy.

Nathaniel has regular appointments with multiple outside agencies and has been hospitalised multiple times due to the challenges SWS brings, and there have been times we've expected the worst. But in the face of adversity, he is thriving and making good progress in his development.

Our boy is the happiest, most resilient, and purest soul we could have asked for in a child, and we do everything we can to support him and advocate for him.

This is why I will be raising money for Sturge Weber UK when I run my first half marathon in February.

As such a rare condition, it is still widely unknown. For example, each time we have had to call an ambulance, we have had to explain about SWS to the paramedics.

It is so important to support smaller charities and rare conditions, so please, if you can, consider donating to such a worthy and personal cause.

Thank you.

Melissa and Nathaniel xx