My Story

Here is our story.

I am raising money for the Tuberous Sclerosis Association, a charity close to my heart following my son’s diagnoses 5 years ago. I still remember it like it was yesterday, when I received a phone call from Katherine, to say our little baby boy, our bundle of joy, wasn’t well and has been taken to hospital. This is where it all started.

Once at the hospital, I noticed my little baby was behaving unusually, in a way I have never seen before. It was difficult watching him as there was nothing I could do. Later, we found out it was an infantile spasm caused by a genetic condition he had (Tuberous Sclerosis), this was when he started on his medication. He couldn’t keep his eyes open, and he was sleeping most of the time.

I guess all parents dream of their kid’s future as soon as they born, and I did too, but this was not something I was ever prepared for and didn’t know how to deal with it.

One thing or another, our Emre was diagnosed with Tuberous Sclerosis. And thanks to all the medical staff involved in his care and his medication, he was no longer having seizures and it was under control.

One of the scariest moments was when we never knew if he would be able to walk or talk. But guess what? Now he doesn’t stop chatting away and runs around like a headless chicken!

Until Emre was diagnosed, I had never heard of Tuberous Sclerosis and many people still haven’t. I am taking part in the Great North Run, 11th September, to help raise money and awareness for the Tuberous Sclerosis Association, providing support for those who need it today and helping further research into finding a cure for tomorrow.

I am sure you will see from some of the pictures I will share, Emre is obsessed with golf.

Thank you for reading my story and any donations would be very appreciated.