Baby Levi needs your help!!

Levi’s battle with ultra rare KCNT1 (extremely rare form of epilepsy)

Levi is a very much loved little 9-month-old boy of Simon & Chloe Zapantis and 6 year old sister Teleah. He is a chubby cheeked charmer with a smile to melt any heart and is the most easy-going little dude on the planet.

The Zapantis family were blessed when they welcomed little Levi into the world after a very uneventful pregnancy and natural birth on 14th September 2020. The four months following his birth were blissful as the family settled into their new life. Then on the 2nd February their world was turned upside down and inside out when Levi had his first seizure.

Since then Levi has endured thousands of seizures wracking his little body and has undergone numerous medical tests such as sedated MRI, CT scan, X ray, lumbar puncture, blood panels and EEG’s to try and determine what was wrong during his 2 month hospital stay. Then on the 26 March Levis family was told he had an ultra rare (only a few hundred diagnosed cases worldwide) genetic epilepsy condition called KCNT1 – migrating focal seizures of infancy.

This condition means Levi will experience seizures that are resistant to medication (uncontrolled) BUT it is not JUST epilepsy. With this genetic mutation also comes a host of other co-morbidities, one of these being low muscle tone. Due to low muscle tone children with this condition are likely to never walk or talk and will also have an unsafe swallow which requires them to be tube fed. Other issues presenting with this disease are vision impairment, heart arrhythmia, low bone density and reduced life expectancy to name a few.

Levi’s requires 24/7 monitoring due to his uncontrolled seizures and will need hours of therapy EVERY DAY for the rest of his life. To say their life has changed is an understatement and Levi requires a parent to become his full time carer which is placing high financial stress on the family on top of dealing with Levi’s diagnosis.

They are the most generous and giving family who never ask for anything and would give you the shirt off their back to help you out. Now it is our turn to rally around them and dig deep to make sure that the family can provide Levi the best care and allow them to make wonderful memories with their little guy without the financial pressure and burden that comes with this diagnosis.

Simon who is a current serving Queensland Police Officer in a front line specialist unit is out there everyday protecting the community.

Chloe also gives back to the community working in the education sector.

So let’s all give back to the family that have already given so much.