Some good friends of mine from the rugby community gave birth to a little boy, Noah Daniel Cooper, on the 26 Aug 23.

A few hours after he was born he began having seizures. Many tests were completed to find the cause including CT/MRI scans and lumbar punctures, all before he was a week old. Many different medications were given to manage the seizures but nothing seemed to work. 

Due to the nature of the seizures, 20+ Tonic Chlonic seizures a day which lowered his oxygen levels, Noah was transferred to Sheffield Children's hospital where genetic testing was completed to determine why the seizures were happening. At 3 weeks old he received the diagnosis of KCNQ2-Developmental Epileptic Encephalopathy, a rare genetic disorder that was only discovered in 2012. It was a spontaneous mutation (de novo) and wasn't inherited from his parents. From this diagnosis, the amazing neurologists were able to start him on the right medication to help stabalise his seizures and by the age of 5 weeks old they had them under control and were finally able to leave the hospital.

KCNQ2 is a spectrum and can affect children in many different ways. Noah is globally developmentally delayed from his disorder but is doing amazing in early intervention therapies. He is trying his hardest to learn to crawl and is such a happy boy who is loved by many.

I would like to help raise money by completing a hike from Flambrough to Scarborough for the KCNQ2Cure Alliance who help fund research to hopefully one day find a cure for this rare genetic disorder.

I’m thrilled to be participating in Team KCNQ2, a fundraiser supporting KCNQ2 Cure Alliance! I’m passionate about this cause and need your help! Every donation—big or small—helps me reach my fundraising goal and directly impacts this important cause.

Here's how you can help:

• Donate: Contribute whatever you can. No amount is too small!
• Spread the Word: Share my fundraising page with your friends, family, and social networks. Let’s spread awareness so we can raise more!

Thank you for standing by me in this effort. Your support means the world to me!