My heart is truly breaking writing this and it's not an easy read... so I apologise if it makes no sense at all... If you have any questions please do ask because it might actually be things that we don't know and could try find out for ourselves too! ❤️

On the 7th May 2018 (lillys 2nd birthday and also the worst day of our lifes) lilly came and got in bed with us and went back to sleep which was very unlike her and woke a few minutes later having a seizure and not breathing. At the time we had no idea what was happening and called 999 immediately. When the paramedics arrived she had started to come round and they suspected a febrile convulsion but wanted to take her in to hospital just to Check her over as her temperature was high. An hour into been in hospital came another seizure... Then another... And another in total she had 9 in the first day. That's when they moved lilly to HDU and came to us and told us they no longer thought they was dealing with convulsion seizures but something more. That day she had tests and tests. Medication after medication to try and control the seizures. We have NEVER EVER seen anything as heartbreaking in all our life and truth be told family was ringing to come to hospital to see her and we refused because me and Oscar honestly believed that was our last day with her 💔 the seizures and tests continued for days when they finally found she had epilepsy (by eeg) and viral meningitis which had triggered the epilepsy. By day 10 the hospital had managed to get her seizures under control (after having 32 seizures) and after doing 48 hour seizure free we was allowed home!

Lilly has been tonic clonic (the seizures you see on TV and think of as a seizure) free for 18 months now 😍 she still occasionally has absents and myclonus... However because of how the epilepsy was found and the fact that lilly didn't follow patterns a very expensive and rare genetic testing was granted to be sent to great ormand Street for testing and 6 months later we have the results...

Lilly has a rare genetic epilepsy condition called PCHD19 which was only discovered in 2016 so is still been researched and tested.

💜Seizures usually start between 3month and 3 years of age and are started by fever (just like lillys)

💜Seizures come in clusters in which they can't be controlled by anti epilepsy medication.

💜As lilly gets older the amount of time seizure free will get closer together.
These seizures currently can't be controlled so their is no medication to help help or stop them.

💜Boys with this condition tend not to show any symptoms and it lies dormant in their body however if they were to show signs or have a seizure unfortunately they do not live. Girls with this condition live considerably longer but also too have a shorter life expectancy.

So what does this mean for lilly?

Right now her future is uncertain. Due to the rare nature of the condition few tests have been done. The average people go seizure free is 2 year however one person has gone 13 year seizure free!
There is a trial coming the uk Hopefully this year... been trialled in only Sheffield and London and lilly will be tested to see if she is eligible.
She will have a lot of decisions to make when she comes to having her own children as this can be passed down to her children. Other than that we just have to take one day at a time and pray for seizure free!!!

Hence our reason to raise as much money as possible for this cause so more test and trials can be done!!! No one should have to sit and watch their child have seizures full stop... But then told be told they are uncontrollable and as they get closer together pose the worst possible thing a parent could ever expect is just hurrendous!!! WE NEED A CURE!!