I'm fundraising for our precious daughter Ruby Rose & all our other warriors fighting the Epilepsy storm & in loving memory of the ones we have lost to Epilepsy & SUDEP
1 in 25 Australians will be diagnosed with epilepsy in their lifetime.
💜Ruby Rides epilepsy & Focal Cortical Dysplasia💜follow her journey on Facebook if you wish.On May 6, 2022 our precious Ruby Rose’s life was turned upside down by epilepsy. 7:30am I found ruby having a tonic-clonic seizure in bed still sleeping & unaware her body stiff, limbs jerking, tongue out, teeth clenched, eyes rolled back & grunting. I immediately called 000 we were then taken to Townsville University Hospital for observations.
“That was the scariest day of my life”
Five weeks prior to this something strange started happening with Ruby on March 31, Ruby started to lose her words and could not talk this started happening 2-3 times every day A week of this went by the doctor ordered a full blood count and MRI these both came back normal. April 25 Anzac Day night Ruby woke me through the night unable to talk properly dribble on her face trying to tell me that she thought she was shaking I would tuck her back into bed not knowing what to think this happened for a few separate nights and then Mother’s Day May 8, 2022 3:30 am and 5:30 am our sweet girl had 2 more tonic-clonics this time sitting up gasping for air, eyes fluttering and head twitching. We presented back to Townsville University Hospital where they admitted Ruby for further monitoring she continued to have more tonic-clonic episodes every morning and now the loss of words thing would happen 12-13 times a day her face and mouth now twitch and sometimes she will giggle uncontrollably. After day three in hospital they performed a 30 minute EEG (electroencephalogram) tracing on her brain we received the results the next day they said there was a lot of abnormal activity happening and they wanted to fly us to the Queensland Children’s Hospital in Brisbane we arrived there the next day may 12, and put under the care of neurologist and epileptologist Dr Shah he ordered another MRI and a 72 hour EEG four days later we were diagnosed with focal cortical dysphasia type 2 and frontal lobe epilepsy.
This means some of Rubys precious little brain cells did not reach the places they were destined for when she was still in the womb this is what causes her epilepsy. So the strange episodes of loss of words face twitching and giggling are a focal seizure that means Ruby was experiencing about 13 focal seizures a day before starting her medication. She is now under the care of the wonderful Dr Malone at at Brisbane children’s Hospital and under the wonderful Dr White at Townsville University Hospital.
I am one of many taking on Townsville's 2.5km Walk for Epilepsy, raising funds and awareness to ensure people affected by epilepsy in north Queensland have access to the support, training, and information they need to live well with epilepsy.
Sending love Ruby ❤️