Finding Joy in Our LGS Journey

Nyla's Story

While in utero, Nyla had a fetal ovarian cyst that grew to almost 2 inches throughout the pregnancy. The solemn and uncertain look on the doctor’s face when he saw it made my heart sink and I was overcome with worry and uncertainty. It was the first of many scary unknowns in Nyla’s life.

Nyla began having seizures at 2 1/2 years old. At first, there were a lot of unknowns because the spasms started out very mild. Her general practitioner didn’t know exactly what it was, but sent us to neurology at the local children’s hospital. They called right away and scheduled an emergency EEG at which point I knew it was serious. 

After the EEG they started Nyla on a medication that made her begin to have tonics, we stopped that then the drop seizures started, often in clusters lasting several minutes.

In the beginning, there were injuries when drops started. We didn’t know they were coming nor told how to prepare for them to protect her. She’s broken her nose on a table, contusions on her head, hit and broke her shin with her head because her body would suddenly and intensely fold in on itself, and chipped teeth. We then spent so much time, money, and energy in closing off, padding, and numerous different helmets to protect her. The helmet was a challenge all on its own for a while. We worked full-time and had two young children and now had to find full time care for her in the home which was its own unique new challenge. Everything about your life turns upside down and you have very little direction, resources, or answers.

The drops eventually evolved into clusters, where she could have 25–40 in one episode, multiple times a day. She also experienced daily epileptic spasms and absence seizures. Through various medication trials, she had infrequent tonic and tonic-clonic seizures. In 2019, we started a new medication, and she was seizure-free for almost 10 months, no longer needed a helmet, and we let her run around the house like normal without padding. This was before I understood the concept of the medication honeymoon period. The seizures eventually returned as tonic or tonic-clonic, and we had to adjust our lives again, confining her to a padded space. Since the seizures came back in 2020, we’ve tried numerous medications, diets, VNS, and she still has weekly tonic or tonic-clonic seizures, daily epileptic spasms, and the occasional drop seizure.

When Nyla initially received her diagnosis, I cried for extended periods of time as profound grief began to set in. All the hopes and dreams you had for your child have died, leaving you with the reality of a child who, while still alive, faces immense suffering. You find yourself shouldering the heavy emotional weight of confusion and heartache, navigating through tumultuous and uncertain situations that seem unrelenting.

The PTSD symptoms from watching my child suffer endlessly, day and night, began to overwhelm my daily life. For several years, life was incredibly challenging emotionally, but I sought professional trauma therapy, did a lot of self-work and self-care, and while life remains extraordinarily difficult in many ways, it is now manageable, and I find joy in the life we have. I no longer grieve for my child, who is very much alive; instead, I focus on living in the present moment, being with her, and simply loving her.

Every day, Nyla shows me that strength and beauty exist, even in the most challenging situations. Even when a seizure knocks her down, she gets back up and keeps going. When she’s tired and her body can’t do what her will desires, she fights through it just to keep living. She is a gift, and I am so grateful for her. Nyla enjoys playing with toys, water, standing on her tiptoes and spinning, and looking at picture books.

– Written and submitted by: Nyla’s Mom, Erika

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Updated 09/23/24 (KK)