The Sammy Project

In March of 2017, just before he turned 3 months old, my nephew Sammy had his first seizure.  Over the next few months, twice a week, he would continue to have clusters of 30 to 40 episodes within a 2-3 hour period.  In June Sammy was hospitalized for apneic seizures and had his first video EEG and MRI.  Neither test produced any significant findings for why Sam was having seizures.

During Sam's second EEG( What's an EEG? ), the test was able to catch two seizures and he was diagnosed with generalized-tonic seizures.  He was put the medication Keppra which helped with the clusters but not the overall seizures and he continued to have one or two a week. His neurologist added Topamax, and once a therapeutic level was reached, it was effective at stopping all seizure activity for nearly two months.

The Topamax had the unfortunate side effect of metabolic acidosis  and Sam was referred to a nephrologist who started him on a polycitra-k solution to counteract the acidosis. The acidosis has also caused very low muscle tone.

This past February, Sammy again began to have 1 to 2 seizures a week leading to 2 a day by mid March.  A second MRI and third EEG were ordered.  MRI again showed no major abnormalities or anything that would result in seizure activity. The EEG showed a change, however, in the presentation of Sam seizures and he now has a diagnosis of focal-tonic seizures stemming from the left side of his brain. There is still no clear indication of what is actually causing the seizures.

After his third EEG, his neurologist suggested the addition of Onfi.  However, due to its high cost and ineffectiveness he was taken off the medication. He is still currently taking both the Keppra and Topamax plus Clorazepate, as well as, the Citrate solution.  With all of this, Sammy still continues to have 1 to 2 seizures every couple of days.  

Sam has also had a CGH microarray and trio whole exam sequencing to check for genetic deficiencies that could be the cause of his seizures, as well as metabolic panels, biochemical testing and alpha amino screenings. None of the tests provided any insight to Sam's seizure activity. 

Sammy's current health issues continue to mount:

-Intractable tonic epilepsy
-Status epilepticus
-Metabolic acidosis
-Apnea
-Hypotonia
-Global Delays
-Oral Aversion
-Failure to Thrive


Sam's current neurologist feels that she has reached the limit of her resources and is extending care to other pediatric neurology facilities.  The current fundraising goal will help in covering some of the expenses of getting Sammy to Cincinnati Children’s Hospital for more extensive testing and alternative treatments.  Any donation you are willing to give will greatly help Sammy get the medical attention he needs and will, most likely, continue to need throughout his life. 

With all of this going on Sammy continues to be an amazingly happy kid.  To help with his rising medical cost I am starting this fundraiser, and in his honor I will be running the Onward Shay Marathon  on October 28th in Boise, Idaho.  The plan is to push Sammy in his stroller during the race.  My hope is that this will also build a greater awareness of epilepsy and seizure disorders.  

Thank you so much for anything you can give and let's work together to make sure Sammy continues to get the medical attention he needs.