Help Us Keep Going as We Fight for Ashton Through LGS

My name is Kaylee, and I am a mother to three beautiful children, Theo, Everly, and Ashton.

Ashton is on the autism spectrum, has intellectual disabilities, and battles a very rare and severe seizure disorder called Lennox-Gastaut Syndrome (LGS). LGS is a devastating form of epilepsy that typically begins in childhood and is characterized by frequent, treatment-resistant seizures. Ashton’s seizures began when he was just 4 years old, and over time, they have progressed in severity. LGS often leads to significant cognitive impairment and developmental regression, with many children losing skills they once had. The long-term prognosis is challenging, with a high risk of severe disability and life-threatening complications. Tragically, LGS can also lead to early death, often due to seizure-related falls, aspiration pneumonia, or sudden unexpected death in epilepsy (SUDEP).

These past couple of months have hit us especially hard. Ashton’s seizures have escalated, with sudden, intense drop seizures that have led to serious injuries. He recently needed stitches and even broke his shoulder. We are grateful that it hasn’t been worse, but the unpredictability is terrifying. In addition to the drop seizures, he is experiencing cluster seizures, where even after receiving rescue medication, he continues to have hundreds of seizures in a single day.

This past week, he has been in the hospital, mostly sedated, yet the seizures persist. With everything going on, I have had to cut back on work, and my husband has had to miss work as well. We were already living paycheck to paycheck while trying to get out of debt, and now we are falling behind fast. The financial strain, on top of the emotional toll, has been overwhelming.

We are now exploring more aggressive treatment options. Ashton has referrals in place for a Vagus Nerve Stimulator (VNS) implant (a device that can help reduce seizures by sending electrical impulses to the brain). He is also being evaluated for Corpus Callosotomy ( a brain surgery that may help lessen the severity of his seizures by disconnecting the two hemispheres of his brain). These are big decisions, but we are hopeful they could bring him some relief.

Still, I try to focus on the blessings we have. Ashton, even in his hardest moments, remains a bright light. When he is awake and aware, he smiles through it all. He is the strongest person I know, and I have to be strong for him because he deserves that. I don’t know what the future holds, and I pray every day that God keeps him alive and well.

It’s hard for me to ask for help, but I know that sometimes, you have to allow people to support you. If you feel called to help in any way: whether through prayers, sharing our story, or financial assistance, we are deeply grateful.

Thank you, and I cannot wait for the day Ashton gets back to smiling and being his sweet self again.