Caroline Kiefer

Team Lani taking part in Walk for Epilepsy to raise awareness and raise funds for the amazing service the Epilepsy Foundation provides

In the past couple of years Alannah's Epilepsy has unfortunately declined and in early 2023 she received a diagnosis of Lennox Gastaut Syndrome (LGS) and Developmental Epileptic Encephalopathy (DEE). 

LGS is a severe form of epilepsy that doesn’t respond well to medications. Alannah is now requiring 6 different anti-epileptic medications (5 of which she has twice each day) and yet still her life is profoundly affected by LGS. In 2024 she has received her underlying diagnosis of GAND - Gatad2b associated neurological disorder. There are around 400 individuals worldwide with GAND and of those, only 25% have epilepsy.  Of those 25%, we have been told that Alannah is on the ‘severe end of the spectrum’ for those with epilepsy. Talk about a cruel blow. 

If there is one thing we wish we could make easier for Lani right now, the seizures and abnormal background epilepsy caused by LGS would easily be on top of the list. The impact on her life is huge and the toll it takes is so unfair. 

No one should have to deal with what she deals with day in and day out, and yet she still spreads her beautiful smile and infectious personality everywhere she goes! 

Alannah is our super brave epilepsy warrior and we are incredibly proud of her every single day. 

We want to raise money and make a difference for all those living with epilepsy and for the amazing services provided by Epilepsy Foundation. They’ve helped us so much in our journey. Please help me by giving whatever you can using the 'Donate' button. The more people that know about the walk, the greater the impact, so please also spread the word by sharing our page with your friends and family. Thank you in advance for your generosity, it means a lot!