My Journey from Fear to Hope: Navigating a new normal as a parent
By Hana Schwend
Our oldest daughter Ruey, now six-and-a-half years old, is a sweet, smart, and adventure- loving little angel who had been developing completely normally until she had her first seizure when she was three. She was sick with a high fever, had crawled into our bed in the middle of the night and then around 5 am, cried out and started seizing. I’d never witnessed a seizure before, only heard about it, but as she was convulsing and crying out, I knew deep down in my sinking stomach that’s what it was. We took her in to see her pediatrician later that morning but by then she had returned to normal, and we were told, “You get one free seizure. If she has another one, that’s not good and she needs to come back in to be seen.”
Just a month later, on Thanksgiving, Ruey was playing with her cousins in the basement when my husband came up the stairs holding her semi-conscious body and said she had another tonic clonic seizure. We rushed her to the nearest hospital but then got transferred to another hospital because they had better imaging equipment for seizures. She was admitted that night and they performed an EEG, but nothing conclusive came from it other than small brain wave abnormalities. Thankfully, we were sent home with rescue medicine in case she had another seizure.
Her next tonic clonic seizure happened on Christmas morning, right before we were going to open presents. We still had no idea what condition she had, but after that seizure, and for most of December we observed more frequent, different types of seizure. She was having drop seizures (atonic seizures) several times a day, up to fifty a day before we stopped counting. Finally, after more EEGs, she was diagnosed with Doose Syndrome, a rare childhood epilepsy that is drug resistant and presents with multiple seizure types. She was having tonic clonic, absence, myoclonic, and atonic seizures.
The hardest part going through this was the vast unknown. The isolation, the endless worry, the sleepless nights. We had a lot of support from our family and friends in the form of phone calls and texts, but we still were utterly alone in this new situation that impacted our whole family. It wasn’t until I found online groups of parents of children who had gone through or were also currently going through this exact situation, that I felt an immense amount of support and answers. Then, along came JoshProvides!
I applied for a grant through JoshProvides to help with medical expenses. Not only was JoshProvides extremely fast to respond, but they were also wonderful to work with. They helped me fill out the application and made me feel so connected to their family. There is nothing more bonding than sharing a similar experience of trauma as parents. They made me feel whole again and that we weren’t alone. Receiving help with our bills allowed us to give more time to care for Ruey. We started Ruey on the medical keto diet to treat her epilepsy, and miraculously, after almost two years on the diet, Ruey had become seizure free! Last year, she had an EEG that returned completely normal, so we are hopeful she has fully outgrown her epilepsy!
We could not have gone through this treacherous journey without the help and support from organizations like JoshProvides, and we hope that they can continue to do be an invaluable resource to families in need during crucial and terrifying times. We hope Ruey’s story can provide the hope that epilepsy can be manageable, and that at times it can even be overcome.
