26/03/2024
March 26th is National Epilepsy Awareness Day.
There is no cure for this neurological condition. There are millions of people who battle this condition every single day, we call them Purple Warriors (for hidden disabilities).
My youngest has Epilepsy and unfortunately she is also drug resistant. Willow was diagnosed at the age of 2 but it took them years to find out what kind of Epilesy we was dealing with. The diagnosed we received was Myoclonic Seizures with eye flickering (these are only the ones we can see as Willow has constant seizure activity in the background of her brain and even whilst shes sleeping). Willow has also inherited a rare chromosome disorder from me which has also caused her Epilepsy. Willows is also none operable. The Epilepsy is coming from all over her brain and not just from 1 spot. There's been some scary parts where we thought she wasn't going to come out of it but of course she's had amazing teams around her!!
Willow has been hospitalised on numerous occasions due to her seizures.
When she has a Tonic Clonic Seizure we don't have alot of time to get it under control. If we don't get her seizures undercontrol before the 2.5 hour mark, it makes it even more difficult to get control of the seizure with how drug resistant she is.
Unfortunately there is a condition call SUDEP and it scares the crap out of me. This fear is with me every day, praying my child isn't the 1 cause out of 1000.
We need to spread more awareness about Epilepsy and educate more people on how to help someone who is having a seizure, it will help save their life.
We need more funding to do more research into finding a cure for this debilitating condition.
We can not thank the amazing nurses and doctors who've worked so hard to help her every time she's been taken to hospital.
Our little warrior is amazing and she fights so hard against EP!
I wear purple 💜 with pride as my child is a Purple Warrior 💜
