04/01/2023
This is jacalyn a local Ipswich mum, a mum who was at the hospital alone while next to her draughter decided to make a TikTok account for fun but most of all to raise awareness of this very rare condition called KCNT1. Ember was laughing, talking saying mumma and dadda, sitting up, rolling over like any baby does as they are growing until she started having these seizures and lost everything and basically being a new born again. Ember is such a brave little girl, her mum jacalyn and dad are such brave, strong and beautiful people. Please could anyone go to her TikTok give her a follow support her aswell, her PayPal is in her TikTok bio linktree.
“Ember started having seizures at 10 months old, just before Christmas last year. She had her first EEG in January and commenced on Keppra. By February she was on her max dose of Keppra and was still having 30-40 seizures a day.
We were admitted to the Queensland Children’s Hospital for an overnight EEG (her seizures at that point were all in her sleep).
Once the neurologists saw her seizures on the EEG we were told it wasn’t safe to return home without them being more managed.
Her seizures are migrating focal seizures where she would go stiff, hold her breath, salivate and her eyes flicker. They would last anywhere from 1-6 minutes at a time.
We were in hospital for 2.5 weeks that admission. Genetic testing was completed and were sent home on four anti-epileptic medications and a rescue medication.
Within a few weeks we were back in hospital and from then we have been in hospital every 2-3 weeks for 1-3 weeks at a time.
Right after Ember's birthday in March we got her genetic results: KCNT1. Our hearts broke as we looked at our beautiful smiling, laughing, crawling, typically developing child and couldn’t imagine her any different.
KCNT1 has two phenotypes and Ember’s specific gene mutation is found in both but her seizures are more the early onset EIMFS (epilepsy of infancy with migrating focal seizures). It sees children regress, never walk or talk and not meet developmental milestones.
Honestly, Ember is continually relearning - we just spent nine weeks where Ember regressed back to pretty much newborn state, unable to sit, crawl or have head control.
I will tell you that she is so determined, strong-willed and independent.
If she hears someone say that she can’t, she proves them wrong.
She has the most beautiful big blue eyes that look at the world as if they have seen it all before, she has an old soul for sure.”
A special thanks to Jacalyn for being so open about sharing your story.
You can follow Jacalyn and Ember’s epilepsy journey at Ember’s Journey
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