We were at California San Rafael University Hospital in California last November when our daughter Becky’s very first seizure began. Despite valiant efforts to manage Becky’s symptoms, the seizures soon became constant. A hospital admission confirmed that Becky had a relatively rare seizure disorder called Tegenstat-mediated recurrent focal seizures – a condition thought to be caused by a genetic abnormality in the genes of sufferers. We were informed there was nothing further we could do to help Becky. She would have to be put into a long-term, inpatient care at the school’s hospital in mid-November, and stay there for another five months.
Within 10 days of her admission to the hospital, Becky was transitioned to a long-term, domiciliary placement. Her progress was swift – her daughter was home on her own in four days. The school was supportive and professional with us throughout our battle with her seizure disorder.
During our time at the hospital, my wife and I each began a cardio programme to help manage Becky’s medication and manage weight gain. And Becky’s attempts to start swimming in the pool were promptly taken up by the rest of us. For a girl as active as Becky, this made a big difference. Becky was afraid of water and had dropped out of swimming due to fear of it and to the distractions it could bring. Going swimming with us was a great way to combat that fear, and then her neurological reactions to being in the water were constant and less consistent – and this significantly decreased the amount of time spent in a pool.
Becky went home for Christmas break, and after a few days at home we were informed that the hospital could no longer provide Becky with a domiciliary placement, and we would have to continue to organise and fund the care we were going to need for Becky through the Home Instead Family Care Network.
Becky was soon transferred to yet another nursing home in California – once more in a complex set of domiciliary settings. This was very much a set-up where Becky would lose, and would fall into, worse spells of seizures. Becky was not progressing well.
Like many epilepsy families, we have a set routine. I have to pack dinner ingredients and ensure Becky is eating them. My wife and I take turns making rounds of physical therapy and therapy for Becky. My wife drives Becky on errands, rides with her to doctor’s appointments, takes her to medical meetings, and leaves late in the evenings for her job. We have been forced to pull together as a family – as we would with any member of our family.
The illness that is destroying Becky is a vicious cycle. Hereditary epilepsy has a very rapid onset, and according to the National Institute of Neurological Disorders and Stroke it can be almost fatal in one of the worst forms of the disorder. It strikes so violently and unpredictably that typical changes in brain function do not occur until after months of seizures. In the case of Becky, there have been far too many seizures for anyone to predict at the onset.
How long Becky will live is anyone’s guess. That will be the subject of another struggle. But the family is determined to win this fight. While we desperately fight for Becky’s life, we are also living our lives for her. At times it is excruciating and very challenging, but we will be ok.
Becky, from our lives, is very much an awareness event. We are more successful in educating than we would have ever been without Becky’s seizure disorders, her awareness of neurology and the stress of illness. Our great hope is that the awareness and educative campaigns that we make a part of the lives of the people Becky touches will impact the lives of others. There is nothing much we would do differently. We will be living with Becky for many more years and sharing our story with the most urgent struggles to come our way.
• This article is part of a series about National Epilepsy Awareness Month and how epilepsy charities are using the month to raise awareness and to raise money to support people living with the condition. For more information or to donate, visit epilepsy.org
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