Epilepsy Does Not Define Her

2015-1120 She Does Not Let Epilepsy Stop Her

My Opinion

I chose to share the following article primarily for two reason:

  • It illustrates the value of a second opinion, even when you are committed to a specific doctor, hospital, or therapy.
  • It is proof some teachers do more than educate students.

Click here to read another Beyond Adversity post.

Article by Katey Anderson, Aryssa’s mom

Aryssa’s journey started several years ago. We knew from the time she was very young that something just wasn’t “right.”  Aryssa started attending an early childhood special education preschool when she was 3, and that’s when we first heard about the possibility of epilepsy.  A teacher thought we should have her eye fluttering checked out, because it might be seizures.  Over the next couple of years we spoke to several doctors about it, but it was always attributed to other things, such as avoidance and anxiety.

It wasn’t until the August before her second grade she had a cluster of seizures that lasted for hours.  The emergency room doctor referred us to another hospital, where they eventually diagnosed her with epilepsy.  That day was one of the hardest yet relieving days of my life.  We FINALLY had answers, yet I knew we also had a long road ahead of us.  We stayed at that hospital for two years, but I just didn’t feel it was the right “fit” for us.

Gillette Children’s Specialty Healthcare’s name kept popping up, and I decided it was time for a second opinion.  We were given a referral for Gillette from Aryssa’s pediatrician.  Our first appointment we met with pediatric neurologist Timothy Feyma, M.D.  During that appointment, I learned more about epilepsy and the specific types of seizures Aryssa had than I had in two years at our previous hospital.  Dr. Feyma truly wanted to find a reason for her seizures.  He treated Aryssa as an individual, not just another patient.  He also was very clear in letting me know that Aryssa’s issues were NOT MY FAULT! This is something parents, especially moms, struggle with.  Sometimes a parent’s guilt can be worse than the diagnosis.

Since finding Gillette, Aryssa’s road has been a bumpy one. She has struggled with her epilepsy a lot during the past year, but I’m so happy we found Gillette and Dr.  Feyma when we did.  The daytime nurses and the telehealth nurses I have called in the middle of the night have been nothing short of amazing. They have always been helpful and willing to answer any questions I have.  I can’t say thank you enough for all they’ve done, even if it was just being a calm voice on the other end of the phone.

Today Aryssa is a happy, loving 12-year-old.  She’s in seventh grade and turning into a typical teenager!  She still receives support in school, and probably will for the rest of her life. But despite her struggles, she always tries to have a smile on her face!  She’s the best big sister and she and her brother, Isaiah, are best friends.  She loves watching sports and is a huge Justin Bieber fan.  On the outside you would never know the struggles she has endured in her short lifetime. Her strength and ability to overcome those struggles has made not only her, but our entire family, stronger. Epilepsy may be her diagnosis, but she doesn’t let it define her!

Credits

Click here to read another Beyond Adversity post.

Thanks to Katey Anderson (Aryssa’s mom) for sharing the story; the teachers, doctors, and hospital that helped Aryssa find the help she needed; and all the people who, directly or indirectly, made it possible for me to include the picture and text in this post.

 

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