Epilepsy Awareness Month #Run4Joshua
This month’s blog is going to be a departure from my regular running blogs because this topic hits me so close to home and something I am passionate about spreading the word and awareness. In 1969 the Epilepsy Foundation declared November as National Epilepsy Awareness Month and was passed by Congress in 2003. I got to be honest, making it through writing this will be difficult for me and many tears will be shed, but it is an important topic and if it can help and impact even just a few people that read it, then I feel like I made a difference!
Joshua’s Story
It was a normal Saturday morning in July of 2018. My wife Kate and I were getting our son Joshua James dressed and ready for breakfast. However, something happened, his body started to tense up and the side of his mouth and right side of his body started to clinch as he started to stare off into space. “What was this? Was he having a seizure?” as I really never witnessed one before. When he came too, Joshua was out of it. However, he mustered up the strength to have breakfast. After eating, Joshua again had two more seizures, and we knew something was seriously wrong. We ended up bringing him to Seattle Children’s Hospital.
Seattle Children’s Emergency Room was great! Very responsive, kind and caring for Joshua. I remember the Neurologist finally made their way to evaluate him. They said he had Epilepsy and needed to get started on anti-epileptic medication immediately. “Wait a minute? Epilepsy? What is that? There is nothing wrong with my sweet little boy, how can he have something wrong with him?” Thus began our journey and new relationship with this neurological disorder, Epilepsy.
The next year and a half were tough on our family, especially Joshua. He had numerous seizures. Some days he would average anywhere from 20-40. Nothing is more heartbreaking then when your 1-year-old is crawling and the next thing you hear is a big “thud!” because he fell to the ground spasming because of a seizure. We had numerous trips and stays at Seattle Children’s Hospital because of this. He had what was known as intractable epilepsy, meaning that his seizures were not being controlled with medication. I remember December of 2018 during a stay in the hospital, Joshua had an MRI for further evaluation, the Neurologist came in to tell us that he had signs of brain atrophy, and they were not sure why. Tears streamed down Kate and my face. What was happening to our boy? He was run through numerous tests, genetic tests, blood draws, eeg’s, etc…still nothing coming back conclusive as to why he was having seizures. During this time, he was also diagnosed to have ASD (Autism Spectrum Disorder). Witnessing your child go through all of this is absolutely heartbreaking and nothing I wish upon any parent.
Unfortunately, since having seizures, Joshua lost all ability to speak. We knew what he wanted through his body language. Joshua was the absolute sweetest boy you would ever meet. He had this infectious smile that would light up a room and your heart. He had the biggest, cutest double dimples. He was the bravest person that I even knew.
With all these seizures, hospital visits, therapies, he never threw a tantrum. He would smile through it all. He brightened up the lives of everyone he has ever met or those who have seen him through our social media posts. He was such a trooper through everything. He loved taking walks, hikes, playing with balls, books, people, and especially food. He was such an amazing little boy who exuded love to everyone around him.
Finally, Joshua was able to find some control of his seizures. He was taking 5 different medications twice daily. I know, seems like a lot, and it was, but it was helping! He also started ABA (Applied Behavior Analysis) Therapy in addition to the Physical, Occupational and Speech Therapy he was already getting weekly.
Then on August 23, 2023, I received the phone call. I was driving back home early Sunday morning after a con-ed conference in Portland. Kate was on the line. Initially I assumed she was just saying hi before going to wake up Joshua. This was not the case. She told me to pull the car over immediately. Stricken with panic, I started to pull over, asking what was wrong. Then it hit me, “Is Joshua, ok?” That’s when she struggled to tell me what was happening. She was waking up Joshua, but noticed that his legs were splotchy, and he was very still. When she turned on the lights, there was no movement. She tried to rub his back, but he was stiff and cold. Trembling, she turned Joshua over and his face was blue, purple, and swollen, he was gone. I wish I had the right words to explain what came over me, but I don’t remember. My soul leaped out of my body and time stopped. I knew I had to get home as fast as I could. I couldn’t even begin to imagine what this was like for Kate. She was by herself, and our sweet boy was lifeless in her arms in his bed. She called 911 immediately and the police/ambulance were there in 3 minutes. They burst through the door and rushed up to Joshua’s room and sequestered Kate to our room. The extreme emotions that she was feeling in that moment, our son was gone, not knowing how to help, and per protocol, as the police were not aware of Joshua’s condition, being interrogated as to what happened while they investigated our house trying to determine a cause of his death. My job was to get home, but those few hours for Kate were a living nightmare. After the questioning and searching, based on Joshua’s condition, it was concluded that he passed away from SUDEP (Sudden Unexpected Death in Epilepsy).
I finally made it home (still not sure how as I don’t remember the drive) and immediately embraced Kate, with no words said, only uncontrollable tears. A very nice Chaplin was at the house to comfort us while we waited for the coroner to examine our son. The sitting and waiting that pursued after this seemed like it lasted an eternity. All sorts of emotions came violently flooding the body that it was hard to process what our new reality was going to be. The corner finally came and before he was to take our son to the medical examiner’s office, we had our chance to say our final goodbyes. Nothing was harder than walking up those stairs to his room. It felt like I weighed 1000 pounds, and my legs were made of Jello. The uncontrolled shaking and tears could not be stopped. When I got to his room and saw him lying there (the corner positioned him in a more presentable manner) I couldn’t even recognize the noises coming out of me. This was the last time I was going to see him, my last memory, I couldn’t hold my emotions together. I stroked his beautiful hair one last time, told him how much I loved him and was going to miss him, that he would be in my heart forever, and gave him one last kiss on the forehead.
This is the worst thing that can ever happen to a parent, to outlive your child. It is not supposed to happen. To live this nightmare and now this is my life now feels like I am living in a constant state of purgatory. The grief journey that Kate and I live each and every day is something I don’t think anyone wants to understand, because quite frankly, I don’t understand it myself. Since this unthinkable tragedy, Kate and I do everything we can to keep Joshua’s memory alive. We run ½ marathons throughout the year with the #run4joshua. The hope of this story is for others to recognize what epilepsy is, how to respond to someone if you see them having a seizure and to understand SUDEP.
What is Epilepsy?
Epilepsy is a neurological disorder in which nerve cell activity in the brain is disturbed (abnormal electric charges) causing a seizure. It may occur as a result of a genetic disorder or an acquired brain injury, such as a trauma or stroke. Epilepsy is the 4th most common neurological disorder in the world and diagnosed if you have two or more seizures at least 24 hours apart. 1 in 26 Americans develop Epilepsy. The word “epilepsy” simply means the same thing as “seizure disorders.” It does not state anything about the cause of the person’s seizures or their severity.
What is a Seizure?
Seizures involve sudden, temporary, bursts of electrical activity in the brain that change or disrupt the way messages are sent between brain cells. These electrical bursts can cause involuntary changes in body movement or function, sensation, behavior or awareness.
What Should You do if You Witness Someone Having a Seizure?
- Stay calm, reassure others around. If a person is convulsing, it may look scary, know normal breathing will return after the seizure. Talk calmly and reassure the person during and after the seizure
- Time the seizure from start to finish. This will help to determine if emergency help is needed
- Keep the person and environment safe. Keep people away and give space. Remove any dangerous objects close by.
- Turn a person onto their side if they are not awake and position their mouth to the ground. This will help if any saliva or vomit try and block the airway
- DO NOT put any objects in their mouth and DO NOT restrain the individual
- Stay with them until they are awake and alert after the seizure
When to Call Emergency Help:
- A seizure lasts longer than 3 minutes
- 3 or more seizures within an hour
- Difficulty breathing
- Person is injured, pregnant or sick
- Person does not return to their previous state after the seizure
What is SUDEP?
Sudden Unexpected Death in Epilepsy is the most common category of death in Epilepsy, however, one of the least understood or talked about. A death is referred to as SUDEP when a seemingly healthy person with epilepsy dies unexpectedly and no clear reason for the death can be determined. An autopsy is required to rule out other causes of death.
Criteria used to determine whether a death is due to SUDEP are:
- The person has epilepsy
- Died unexpectedly
- Death occurred suddenly and during normal activity
- Obvious medical cause of death could not be determined at autopsy,
- Death was not the direct result of status epilepticus
Resources for Epilepsy and SUDEP
- Epilepsy Foundation: epilepsy.com
- Danny Did Foundation (SUDEP): dannydid.org
Kate and I run various ½ marathons throughout the year with the moto: #run4joshua. If you are interested in following us and/or donating in Joshua’s name, follow me on my instagram @pt4inspiredrunner and/or visit my website www.pt4inspiredrunner.com .
If you have any questions or want to schedule a PT evaluation, feel free to reach out to me and schedule at our Vida Ravenna Clinic (206-315-7998).
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