Apr 24

Apr 24 Tis the season

Tis the season when my non-profit involvement and fundraising gears up. For those unaccustomed with non-profit meetings and fundraisers, the bulk of them tend to occur in the spring and fall. Cue all the committee and board meetings, concerts and speeches. I am writing this from the Undiagnosed Diseases Network Symposium in Boston where I am listening to researchers, clinicians, doctors, and patients share experiences, best practices, and latest technological advancements for the undiagnosed community.

Mar 27

Mar 27 In honor of Purple Day

Kelly Cervantes

In honor of yesterday’s Purple Day, I’m changing up my usual format this week and posting an interview with Dr. Ashlyn Sanders, an awe-inspiring woman who has invented PATI, an FDA approved medical device that is already helping prevent oral injury in epilepsy patients across the country.

Mar 14

Mar 14 What is happening here

Kelly Cervantes

This week I’m pivoting from my normal blog style to provide an update on US government funded medical research. With so many eye-catching headlines, there hasn’t been a lot of attention paid to this corner of the government recently – but you should know what’s happening here.

Feb 7

Feb 7 A little bit of light

Kelly Cervantes

If you all are anything like me, you could use a little pick me up right about now. My gift to you this week is a sweet story that comes with the reminder that for some godforsaken reason we have to have darkness before light.

Aug 30

Aug 30 Finding peace (where I least expected it)

Kelly Cervantes

Last year I shared that we found Adelaide’s true diagnosis. Now, additional findings, which Adelaide's tissue and data were a part of, have been published. Learning her diagnosis felt anti-climactic, but this study, even the little bit that I understand, has brought me peace I hadn't imagined.

May 24

May 24 Stronger than yesterday

Kelly Cervantes

If you are fortunate to live long enough, inevitably you will experience moments that forever change the trajectory of your life. These are the dates we recall effortlessly, markers in time, that separate life into before and after. My most significant date is May 26th, 2016. Not even Adelaide’s death, Jackson’s birth, or Anessa’s arrival can compare to the change leveled on our family that day.

May 17

May 17 The selfishness of grief

Kelly Cervantes

Karen Valentine turned to advocacy alongside the unexpected role of medical caregiving when her son Levi was diagnosed with epilepsy. Then, last year, Levi, passed away from SUDEP when he was only 16 years old. During a recent conversation, she mentioned the irony of going from being a selfless caregiver to the necessary selfishness of grief and what a struggle that aspect had been for her. Woah. So, I asked her to write about it.

Apr 18

Apr 18 My (not so) secret garden

Kelly Cervantes

Before Adelaide died, I wrote about the garden she had planted for us, a garden full of people that would lift us up and take care of us after her passing. What I didn’t realize at the time was that as long as I continued to cultivate this garden, by maintaining relationships or doing work in her memory, her garden would continue to grow and thrive.

Mar 22

Mar 22 On Tuesday we wear purple

Kelly Cervantes

Next week, on Tuesday, March 26th, the epilepsy community comes together for Purple Day, one of several epilepsy awareness days throughout the year. While my commitment to this community certainly hasn’t waned, I recently had to acknowledge that my sense of urgency has. Perhaps this is to be expected. I’m no longer administering medications five times a day, fighting with insurance, or holding my daughter as she seizes.

Oct 20

Oct 20 Case closed?

Kelly Cervantes

Earlier this year, I received an email from our representative at the Undiagnosed Diseases Network. They had finally received and analyzed the results from the genome testing done on Adelaide’s donated brain. The emotions that ensued took me on an unexpected ride leaving me yearning for the peace I had hoped would come with a diagnosis.

Mar 31

Mar 31 The trauma of epilepsy

Kelly Cervantes

For those of us well-versed in epilepsy, the connection between seizures and their psychological effects is a no-brainer (pun intended). However, the lack of available providers and treatments is all at once infuriating and devastating. This is a topic that comes up all too often during my interviews for CURE Epilepsy’s Seizing Life podcast. It is also one that this week’s guest blogger, Yarrow Rubin beautifully describes in a powerful essay.

Dec 9

Dec 9 He looks so normal

Kelly Cervantes

I want to be clarify something after receiving several messages following the release of our “Day in the Life” documentary. Epilepsy sucks a whole freaking lot regardless of specific details. You or your loved one doesn’t have to have seizures every day, week, or month - or to have died from them. Someone with epilepsy can lead an outwardly ‘typical’ life: physically, emotionally, behaviorally, communicatively and the impact is still all-consuming and over-whelming. But my guest blogger this week, Carrie Buck says it much better than me.