Our oldest son Aiden’s journey began in 2011 at two months of age when he had a stroke in his left frontal lobe, leaving him with epilepsy, right hemiplegia, and the start of occupational, speech, and physical therapies. This marked a significant shift in our journey as first-time parents and life with chronic epilepsy. We were able to get his seizures under control until seven months old when they changed to infantile spasms. Luckily, his seizures were controlled for a brief period of time.

Knowing what I know now, I realize that surgery could have been brought up much earlier, but it wasn’t until 2023, after a year of research, speaking with experts and parent navigators at the Pediatric Epilepsy Surgery Alliance, and seeking three expert opinions in three states, that it became a viable part of our son’s treatment plan. During that year, my husband and I deliberated back and forth, changing our minds many times, but we were at peace when Aiden was wheeled away for surgery. In July 2024, he underwent a motor-strip-sparing perinsular hemispherotomy. His recovery was remarkable; he returned to school within a month, and his seizures have remained well-controlled.

I became a parent supporter because I want to provide the same level of support that was so vital to my own family’s healing. Navigating Aiden’s journey taught me the importance of having a listener who is positive, non-judgmental, and ready to offer grace. I found clarity through medical testing and multiple opinions, but it was the connection with other parents that made the journey less isolating. Whether you are weighing the consequences of action versus inaction or simply need a neutral space to process, I am here to listen and share our experiences. Having received so much help myself, I want to give back by walking alongside you on your family’s path.

Languages spoken: English