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Last June we welcomed our beautiful baby paddy into our lives. Our family was complete. The 1st 8 weeks of his life I knew as a mother there was something not quite right with him. After 6 weeks of going back and forward to the doctors to be told numerous different things I took him to A&E and this then turned into a 3 week stay in hospital and the start of our whole world being turned upside down. Paddy was diagnosed with epilepsy and started on medication. He had an mri, lumper puncta. 3 EEGs and genetic bloods taken. Watching your baby have up to 50 seizures a day was the worst possible thing for us to have to experience. 

Finally we were discharged from hospital when paddy was 11 weeks old on 4 different epilepsy medications and we have been on the rockiest road possible since . We have since started the keto diet, weaned him of 2 meds and received his diagnosis. Paddy has a rare gene called kcnt1 related epilepsy and the future for us is all a blur. 

The research into this gene is only in America and we are hoping by fundraising through epilepsy action they will start to research the gene in the UK which will start to then give families an insight into the gene and support within the UK. Kcnt1 is resistant to drugs at the minute but we live in hope that one day there will be some kind of treatment that can help our children live a seizure free life. Not only do children with Kcnt1 have seizures but they also have global development delay, with some children ubale to walk or talk. 

Our beautiful Paddy is now 8months old but is unfortunately unable to do anything, he behaves like a new born baby. Due to being on so many medicines he is so drugged up and sleeps 90% of his life. We have swapped baby groups for hospital appointments and know the Rvi inside out. 

However he is an absolute tropper and gets through everything that is thrown his way. We are so proud to have him as our son. Our amazing Padsta 💙

There are 4 of us who had signed up to do the GNR for epilepsy action, Myself, paddy's dad, paddy's auntie and our friend. However the world through us into a pandemic and the GNR has unfortunately been cancelled. We have however deferred our places till next year. We will continue to raise money over the next year to help epilepsy action.

*update* May 2021

Paddy is nearly 2 and still battles with his epilepsy daily and his global development delay. He still behaves like a newborn and needs us 100% of the time. Health wise and seizure wise this is the best place we have been in a while with paddy and he is now off the keto deit. All of his sessions with professionals have started up again since covid and we are trying to help him learn as much as possible. 

With our place for the GNR being deffered to this year and the uncertainty of it going ahead I decided with my dad to sign up to walk 50k in a week for national epilepsy week. This is happening between the 24th-30th May. We have raised an amazing amount of money so for for epilepsy action and want to do something to show how thankful we are. 

Thank you all so much for your support. 

Love 

Team Paddy x

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