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Shaye's Story

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Shaye was born the second of four children to Shane Perry and Dannene Ungeheuer on January 19th, 2002.  From the day she was born, Shaye was always a strong, very independent, stubborn, fun, and happy child.  These traits continued throughout her life as she went though elementary school in Clovis, to middle and high school in San Luis Obispo on the Central Coast of California. 

       Shaye had her first seizure at the age of 11 while visiting family with her mom and siblings in Pennsylvania.  She was diagnosed with Idiopathic Generalized Epilepsy.  Over the next few years she would visit different doctors and neurologists, as well as try different medications;  some would make a bit of a difference, but either the side-effects would be too hard on her, or she would eventually develop an immunity to them.  She then started taking a specific CBD oil and that made a noticeable difference in the frequency of the seizures.

Although always haunted by the seizures, she never let them stop her from doing what she loved, whether it be swimming and having fun at the lake or beach, or singing on stage with the school choirs.  She loved her friends and family and was always the life of the party.  

Anyone that knew Shaye knew her as an independent, strong-willed, fun person.  Although unable to get a drivers license, that never stopped her from convincing us to let her drive whenever she could.  Usually on the backroads and at the lake.

She loved music (such a passion for it), playing with and helping children (she wanted to pursue a career helping the disabled, especially kids), Starbucks, boy bands, Singing (she had such a great voice), Uber eats, sunflowers, and of course, her friends and family.

       In August of 2020, as Shaye was now 18 and eligible, she spent three weeks at UCSF Children's Hospital in San Francisco with her parents to undergo a major brain surgery to install a Neuropace device.  This is a state-of-the-art device designed to detect seizures and stop them before they begin.  Shaye was such a trooper during this time, displaying her strength for all to see as she went through this extremely difficult process.  (It was during this stay that we started getting the idea of a foundation to help others, as it was very normal to see children of all ages alone in their rooms because their parents either had to work, or both couldn't afford to be there with them.)

When she left UCSF her new journey began to monitor and adjust the device so it could reach maximum effectiveness of helping her become seizure-free, as it could take up to a couple of years to dial it in.  She would to go UCSF every three months so they could look at the readings and make any necessary adjustments.  Although the seizures were still occurring, they weren't as frequent, and we could see by the monitoring of the device that it was indeed making a difference. She got used to the device and it didn't hold her back from living a fun life with her friends and graduating high school, which was so important to her.

 

Her typical seizure would last between 30 to 60 seconds.  On Saturday morning, December 4th, 2021,

she had a seizure that lasted for over two minutes.  This was the biggest seizure of her life and it stopped her heart.  Nobody knows why a seizure of this magnitude occurred, or what caused it, but we know it was too big for the Neuropace device to stop.

      We lost her that day, but her spirit remains present for all of us.  She is missed so much, but she was such a believer in Christ, and we revel in the joy that she is finally seizure-free, happy, and flying with the angels in heaven.

This foundation will continue Shaye's legacy of being a fighter and someone who wanted to always make a difference for others, especially children.

Psalms 139:14 - I will praise You for I am fearfully and wonderfully made; Marvelous are Your works.  And that my soul knows well.

                                                                                             - Shaye's favorite bible verse

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