Kayla needs a seizure dog, her story here told by her mother Alannah.
As a parent I never imagined ever having to write a story like this about my child.
You always read about horrible stories but until your living through it you truly don’t understand how horrific it is not being able to save your child.
Kayla was born a healthy beautiful little girl always smiling always full of life.
Never sick until this year 2014 just the run of the mill viruses colds and bugs nothing too serious.
Shortly just before school had ended for the summer Kayla fell ill with a high temperature nothing too outrageous just a slight high one after 3 days she had flu like symptoms at the time there was an awful summer flu going around, we put it down to being that.
She then was feeling much better and decided she wanted to go to my parents for a sleepover.
That weekend she was due to go to a party but refused to leave my parents my mum said she was a little off and maybe wasn’t up to it little did I know making the decision to let her stay again in my parents saved her life.
Only after having a new baby I’d falling asleep on the couch that Saturday night I woke Sunday morning at 4 to my dad ringing me that call il never forget hearing my dad say Kayla was having a seizure in her sleep choking on her vomit.
Thankfully my mum had slept beside Kayla and woke to her, if Kayla had been home she would have been asleep on her top bunk and I wouldn’t have heard her to hear the doctor tell you if that would have happened kayla wouldn’t be with us now is horrendous.
I followed my parents to a&e she was admitted straight away I let my parents go home that morning 10mins later I witnessed the most horrific sight I’d ever seen my baby my precious little 6yr old having a horrendous seizure like something from a horror film I begged the doctors and nurses to save my little angel
How could this happen to her a normal healthy child what was wrong!
As the hours went by I didn’t leave her bedside watching her like I did as a newborn waiting for any sign of more slowing they had been hours apart to then going mins apart days later all the tests they could do and most coming clear they couldn’t find what was causing these horrific seizures they treated her for everything from meningitis to infection in the brain after several days we were transferred to icu in Crumlin kaylas condition worsened she was in full status this is where seizures are completely out of control and your unable to come out of them..Their only option was to put kayla in an induced coma she was intubated and spent another few days lifeless.
Our nightmare was only beginning all kaylas tests where coming back clear scans of the brains eeg’s mri’s ct’s everything doctors couldn’t understand that was was causing these even in the sedation she was still having them.
After days of this I needed a break and went home to my parents to spend some time with our two year old and newborn little did I know Kayla’s dad was by her side being told by her consultant she didn’t think Kayla would make it past the weekend but no to tell me as I was only after having a baby it would be too upsetting.
I only found this out two last week how serious they thought it had been they were thinking brain disease , acute brain infections ,bacterial encephalitis every name mentioned I felt my heart break ..This had to be a bad dream.
After three weeks it was time to wake kayla up they slowly began waking her unfortunately she started having them again and went back into sedation..We were told she may be seriously affected by th damaged that happened during status.
Finally doctors had an answer what was causing all this they went back studied Kayla’s mri’s in detail and found she had been born with a slight brain defect called cortical dysplasia a thickening of the grey mater of one of the lobes on her left hand side affecting her right this part of the brain controls memory and speech.
Kayla was born with this we would have never of known but unfortunately it was like a dormant volcano waiting for something to trigger it …that trigger was two viruses that had triggered that defect to cause epilepsy.
We had answers. .finally
Never having any knowledge of epilepsy I just thought it was something you have and you take medication and your fine..how wrong was I epilepsy is a horrendous disease it can affect anybody at anytime it doesn’t have to be in the family it can be brought on by anything.
I never knew epilepsy can be fatal. It’s horrific how there isn’t more awareness.
Epilepsy nearly killed my daughter she’s had to learn to walk talk and eat again she’s still not herself but hopefully over time we will get her back she’s on horrendous amounts of medication as most medications she doesn’t respond to I watched my baby girl hallucinating terrified to her core of sitting in a chair I held my child while she went through hundreds of seizures I watched my healthy energetic full of life child have everything taken from her.
Slowly she started to improve with physiotherapy OT and speech therapy. My baby had wasted away always being very slight she had lost a further stone wasting away over the weeks she had no strength we were eventually moved to a ward 4 days down kayla was doing great until our nightmare returned kayla slipped back into status back in icu my heart sank ” I begged god that evening to not let her go back to where she was I hadn’t the strength to cope how could I watch her lay there again not knowing..but kayla wouldn’t let that happen doctors wrong again she came back fighting and after two days was back to a ward again one seizure in two days it’s been amazing she’s started walking again talking everything my baby defeated this horrific dream she’s fighting through it everyday determined she can do it all!
Now as we now know Kayla will always have a very aggressive form of epilepsy and it will be a long and hard road all I want for her is to have a normal independent life we can’t always be there watching everything our worry is she could have a seizure at any time and time is everything with seizures I’m terrified of her sleeping at night alone or out playing how can I be there every minute I’m asking people if they could donate as little as you can to help us raise funds to get Kayla a seizures alert dog.
These dogs are trained to be alerted of seizures even before they happen and can alert us or someone near by if Kayla is in trouble also they are trained to lie on her to keep her from harm if she’s mid seizure they can alert us during the night if she had taken one while sleeping having this dog could potentially safe Kayla at a time when we are not around or keep her safe during one.
All we want as parents is for this horrific disease to never hold her back to let her have a normal childhood safely
I thank anyone who can help from the bottom of my heart ♡
You can help Kayla by visiting the funds page here
Find out the importance of a seizure alert dog here