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Epilepsy Blog Relay: One family pushing the boundaries of Lennox-Gastaut Syndrome

This post is part of the Epilepsy Blog Relay™, which will run from June 1 to June 30, 2018. Follow along! Living Well With Epilepsy is grateful to Lundbeck, a Sponsor of the Epilepsy Blog Relay™.

Natalie’s Story

Seventeen years ago, I gave birth to a beautiful healthy baby girl who we named Lilias, after my beloved grandmother. We could not have been more thrilled. As new parents, we read and did everything we should for our sweet baby girl. I signed up for mommy and me classes to meet other moms and give Lili the social experience needed as a baby. Everything was great, but at five months old, I can clearly remember the moment I looked around class and thought, “Why does this seem to be getting harder caring for Lili? It should get easier as you progress month to month.” All the other moms were saying it’s getting easier with their babies. But this wasn’t how I was feeling with my baby. Lili seemed fussy and uncomfortable, and ever so slightly not as engaged with her toys. We chalked it off to her having her first ear infection and I’m sure that made her feel crummy.


However, one month later, on October 21, 2001, Lili had her first seizure and was admitted to the hospital for six days, where she had spinal taps, EEGs, an MRI and blood draws … pretty much poked all over. On that very day, which I will never forget, the doctor came into the ER and told us our perfect, beautiful baby girl had a very serious and rare seizure disorder called infantile spasms syndrome. We needed to start treatment right away. I felt like someone punched me in the gut. What was she saying to us?


From that moment forward, Lili had numerous treatments to try and stop her hundreds of infantile spasm seizures, but she continued to seize and we continued to do everything humanly possible to make it better for our beautiful baby girl. Then, sadly, around the age of four, Lili was diagnosed with Lennox-Gastaut syndrome (LGS), another rare and severe form of epilepsy. We were told seizures would most probably continue into adulthood and global delays would be imminent.


We were then, and still are today, determined to give Lili the best quality of life regardless of how many seizures she has. However, it was a difficult, isolating and devastating time in our lives. She was our first and only child, and we were suddenly thrust into a world we didn’t know about. 17 years ago, we didn’t have the kinds of support for LGS families that there is today. But we read a lot and I searched for ways to help our sweet Lili.


Therapeutic Horseback Riding

While searching, I read all about how therapeutic horseback riding could be an activity for Lili to enjoy while helping to strengthen her. I’ve always loved horses and riding, and thought this would be wonderful for her! I searched numerous places and came upon Easter Seals and their therapeutic riding program. I quickly signed Lili up, filled out all the paperwork and got the doctor’s permission.


Lili was just three years old when we took her to the farm to ride a horse for the very first time! I so vividly remember this day, the first day of riding for Lili. I was anxious. Lili on a horse. Yikes, she had balance issues, low muscle tone and was on a lot of seizure medications. Never mind having numerous seizures. I suddenly felt panicked thinking, “What have I done!” All the mom worries came rushing forward, but then, suddenly, this charismatic and confident man named Matt came right up to us and said, “This must be Lili Gilmore.” And with that, he instantly took my little baby right away from me and he said, “Lili, we are going to go have fun and ride a horse today!”


I’m sure Matt sensed my nervousness as he peeled Lili from my arms and cheerfully got his team ready to help Lili ride her horse. I’m very grateful for someone like that in our lives because I would have been too scared to allow her to do many of those programs. But Matt said to me, “She’s a kid. She can do all of this. There will be four adults with her. And she needs to have fun like everyone else.” I appreciated that from him and I still do.


If it hadn’t been for Matt, I think I truly would have limited Lili over the years by not realizing how many adaptive activities she can participate in. His motto has always been that kids just want to have fun and that they can do anything. Some just need certain supports in place to help them achieve this. Without him, Lili would never have been skiing, tubing, or horseback riding. I think the impact that it’s had on us is that—yes, Lili has seizures. And we need to keep her safe. But that just means we need to add extra safety things in for her. But she can still do it. She can still get on a horse or go down a mountain.


Matt is an amazing person who has really been a Change Agent in our lives and shown us all that Lili can do anything! We are so grateful for Matt and his dedication. Seventeen years later, he continues to advocate and develop numerous programs for special needs kids so they can have fun and participate in sports activities. We are forever grateful to Matt, who has definitely been a clear and obvious Change Agent for our family. Thank you, Matt!


The June 2018 Epilepsy Blog Relay™ was sponsored by Lundbeck – a global pharmaceutical company committed to improving the quality of life for those living with brain disorders, including epilepsy. Lundbeck connects people living with challenging seizures at www.LGSTogether.com and through the LGS Together Facebook page. If you would like to nominate a Change Agent who has made a difference in your life with Lennox-Gastaut syndrome (LGS), please visit https://www.lgschangeagent.com/.

NEXT UP: Be sure to check out the next post by David at http://www.epilepsydad.com/.

TWITTER CHAT: Save the date for the #LivingWellChat on June 30 at 7PM ET.

epilepsy blog relayLiving Well With Epilepsy’s Epilepsy Blog Relay™ is an epilepsy awareness movement to designed to maximize collaboration and eliminate stigma. Thank you to our generous sponsors and partners!

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