Klohe started having seizures at 3 months of age. I remember it like it was yesterday. We were out hiking she slept the entire time. Not normal for her as this girl never sleeps. Once we got home I checked her temp and it was 102.4 so off to the hosptial we went. Once we arrived her fever was 104.7. We were there a few hours and they couldn’t find anything wrong so they said it was something “viral” and sent us home.

A week later she started doing “strange”activities. Her eyes would bounce up and down, her arms would flare out, she would become somewhat stiff. Each day these got worse. I started to research what she was doing down to every movement.. “infantile spasms”. Watched videos, read every single document on it. It said you can almost time them for then they would start at the beginning of the day.  

I had them down to a T of when they would start so I made sure to have her at the hosptial by 3:30am as they would start around 4am. Just like clock work they started. The ER doc told me she was just being startled. I jumped toward the doc and she jumped back. I told her “that’s a startle not this” I asked for a pediatric doc. They admitted her into the hosptial and put her on a 2 hour EEG. During that time I didn’t see her have a single seizure. They came in took it off and I told them I didn’t see any and the doc told me “Momma, she’s been seizing the entire time.” When then met her first neurologist and started this journey. She started off with Infantile Spasms that turned into LGS. 

Klohe received the LGS diagnoses when she was 1 1/2 years old. Through this journey there have been many ups and downs. We watched these seizures take her from a “typical” baby to a zombie. We watched her muscle tone deteriorate where she no longer could hold herself up when sitting, or simply roll over. The normal wasn’t our normal anymore. BUT we have watched her fight and overcome what some doctors said she never would. We have watched her personality come alive. I did FINALLY get that smiley girl back! Watching her work hard every day in therapies to get stronger is inspirational. Shes a fighter!

We have taken the bad and turned them into good. She has taught me so much in life that just because she struggles to do the normal, doesn’t mean she can’t or doesn’t want to do them! She can hike a mountain, swim in the water, play baseball, ride a bike, bowl, and so much more… with just a little extra help! 

She recently received a diagnosis of SPATA5L1 which was found in her 2nd genetic testing. Her neurologist wants to test more kids with LGS to see if this is something included with LGS. I support the LGS Foundation's mission and I hope you'll join me in supporting the critical work they're doing in the LGS Community!