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Finding Hope: Parenting a Child with Life-threatening Epilepsy

On the first morning of our much-anticipated annual family vacation, my 11-year-old daughter Emily learned that a beloved Disney actor had died at the young age of 20. A seizure took his life while he slept. Why was this significant? The obvious reasons… he was famous, my kids had watched him on the Disney Channel for years, he was seemingly healthy and he was way too young to die. The not so obvious reason for the significance of this news is that like Cameron Boyce, my daughter Emily has epilepsy.

Every night before bed we hook Emily up to a “pulse-ox” machine that monitors her oxygen level while she sleeps. Why? Because the majority of her seizures start in the middle of the night while she is sleeping. I can’t tell you have many times she has gone to sleep in her own bed and woken up in a hospital hooked up to machines. When her seizures start, she stops breathing, and requires oxygen to avoid brain damage while the seizure takes its course. The pulse-ox monitor alarms when her oxygen gets too low, which alerts us that she is in trouble and needs help. Without the monitor, she could seize in her sleep and no one would know. The result could be fatal… and in the case of Cameron Boyce, it was.

This is a fear that our family lives with daily. Tucking Emily into bed at night does not bring comfort. The comfort comes from seeing her eyes open in the morning and knowing that she made it through another night. Two years ago, I felt like we were the only family who lived with this fear. At times I thought I was crazy for being so scared and I worried that I was overreacting. Most kids with epilepsy didn’t land in an ICU when their seizures started… why was Emily so different?

In August 2017, 9 years after her first seizure, we learned that Emily’s epilepsy was caused by a genetic mutation on the PCDH19 gene. A quick Google search, after seeing the words “PCDH19 epilepsy” in an email from Emily’s doctor, lead me to the PCDH19 Alliance. Reading the common symptoms of PCDH19 was like reading Emily’s own medical record! We weren’t alone? Emily wasn’t the only one? There were other families who lived with this reality? We weren’t overreacting? I was stunned. A ray of hope had broken through the darkness.

After speaking with her doctor, who very honestly told me that he didn’t know a lot about PCDH19, I contacted the PCDH19 Alliance. Speaking to another parent who was fighting the same fight, lived with the same fears and understood the craziness that is caused by PCDH19 was a game changer for me. I was saddened that other children lived with this reality but so relieved to have support from people who understood.

I spent the next several months learning about PCDH19 and connecting with other families. I stood in awe at the strength and resilience shown by each family. Each child was unique, but so like my Emily. Every family was different, but so much like ours. We all wanted the same things… a cure, seizure control, answers and the highest quality of life possible for our loved ones battling the effects of PCDH19. Slowly, the support and strength of the PCDH19 family sank into my soul and left me with a hope I hadn’t felt in years.

Thankfully, since finding the Alliance, my daughter’s seizures have been under control. I have been allowed time to heal from the trauma of too many hospital visits and life-threatening seizure clusters. Part of that healing was a desire to give back to the Alliance community in a way that was meaningful to our family and would help others. About 6 months after receiving her diagnosis, Emily and I began sending “Hope bears” to children all over the world living with PCDH19. The message of the “Hope Bear” is simple… you are not alone & there is hope to be found in the darkness. Each time a family receives a Hope Bear, they are reminded that there are others who understand. They are not alone.

I’ve learned that life is about leaning on others when we’re weak and supporting others when we’re strong. It’s give and take. The Alliance and the families that I’ve met who are fighting PCDH19 understand this dynamic and it’s beautiful.

As my family continued on our vacation after learning of Cameron Boyce’s untimely death, I thought of Cameron’s family often. I still do. I hope that his family has a community of people who understand the depth of their grief and will hold them as they mourn his loss. I hope that they never feel alone.

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