Support Easton's journey to be seizure-free!

Meet my nephew, Easton Thatcher. He was born on July 16, 2019 after a long and emotional IVF journey. He truly was the first miracle baby in his beautiful family, and two years later was joined by his little sister, Aubree. I had the great privilege of marrying his parents, my younger brother Andy and his beautiful partner Jessie, at a beautiful ceremony 2 years before his birth.

Terrifyingly, almost one year ago on December 26, 2022 their world was turned completely upside down. As Easton was sitting with Andy watching a movie on the couch, he started having a grand mal seizure. Unsure at the time what was happening, Andy screamed for his wife Jessie. Hearing the absolute panic in his voice she came running into the living room to see her precious 3 year old son laying there blue, stiff, and convulsing! They scooped him up and rushed him to the E.R. even as he continued to convulse in her arms. They couldn’t comprehend what was happening or why? Easton had always been an extremely healthy boy who hardly ever got sick. All they could do was plead in desperation for God to not take their sweet little boy.

Unsure of what to do, they plead with the hospital staff to complete any tests that might help pinpoint the source (MRI, EKG, glucose levels, etc.), but were told it was not necessary and this was more than likely just a virus. They sent him home 4 hours later saying it was common to have seizures and to keep an eye on him as he would be a complex case if he had another one within 24 hours. Well, the next day in the pediatrician’s office he had 2 myoclonic seizures in front of the nurse! Even then, the seizures were brushed off as insignificant. (Our healthcare system continues to mystify and perplex all of us!)

Since that day they have fought like hell to get answers and help for Easton, which has included seeing multiple specialists and countless trips to Primary Children’s Hospital in Salt Lake City. They finally diagnosed him with Epilepsy, and he’s currently being treated by one of the top epileptologist’s at the renowned Cleveland Clinic in Cleveland, Ohio (which they have been blessed with access to through the connection of a family friend).

Since this frustrating journey began, Easton has had 19 ER visits, 5 ambulance rides, 2 life flights and 5 hospital stays (4 of which lasting a week or longer). All the while, Easton’s symptoms have become more complex. The time between seizures has become less and less, while the seizures themselves have become more violent, sometimes upwards of 20 in a day! The seizure type has increased as well - he has myoclonic, tonic-clonic (grand mal), absent, and drop seizures. They come without any warning at any time of the day. The longest one he had lasted 18 minutes, and the most he has had in a 24-hour period was 23 grand mal! To date, he has had over 800 tonic-clonic and even more myoclonic. It's truly heart breaking and feels so helpless each time!

For some unknown reason, Easton hasn’t responded well to any of the anti-seizure medications (to date). They have tried several, each one failing to produce a helpful result, leaving only a select remaining few to hopefully work. Recently he has started medical keto, and all dyes and artificial sugars have been eliminated from his diet. Considering he is only 4 years old, he has responded quite well, but he remains on extremely high doses of multiple medications. Andy and Jessie are always seeking answers to get his seizures under control and remain hopeful that they’ll find them – even as they are seemingly running out of options. Easton has had numerous MRI’s, CT scans, PET scans, EEG’s, a MEG scan, plus genetic testing and all the lab work you can think of, and still there is no explanation as to why he is having them.

His parents are currently awaiting the results of a MEG scan, which will hopefully pinpoint the exact location of where the seizures start. From some of the EEG scans, they do know they start in the back right part of his brain. If they’re able to pinpoint the location, surgery may be an option, but there are a lot of risks involved as you can imagine. Andy and Jessie are hopeful they can minimize his seizures naturally with a clean diet, targeted supplements, and as little medication as possible. They are also going to continue to fight like hell for answers and clarity from the medical experts.

His Mom Jessie shared this with me:

“He is the strongest little boy I know. I don’t know how he does it, but I am beyond amazed by him every day. Every test, every needle poke, all the medicines, diet changes, and every other obstacle he faces - he is so brave.

Every seizure takes a toll on his little body and one way or another he always bounces back. He is very aware that something is wrong but is unable to tell when or what might be coming. We have been very blessed that Easton is so strong and resilient, but we know that can all change in the blink of an eye, and we don’t take that lightly.”

I have witnessed the incredible amount of love and devotion that Andy and Jessie have shown as they face such uncertainty. I see how this has been very hard to manage while they have done their best to keep everything afloat, and I also see how the bills and the stress levels are starting to take a toll on their mental wellness, physical health, and financial stability. As all good parents do, they’ve worked hard to hide some of the mounting struggles and obstacles to keep a sense of stability in their home for Easton and his little sister Aubree. They also, without question, would go into debt a million times over if that’s what it meant to get Easton the level of care and support his little body needs. No parent could ever expect this, and being such a young family, they weren’t prepared for all the medical and travel expenses. Thankfully they have insurance, but are constantly surprised at the number of denied claims (things like Life Flights and in-home medical supplies such as the oxygen tanks he would need if he stopped breathing during a seizure).

As of now they owe upwards of $75,000, and this number increases every month and with every visit, and this is just since January of this year. That astronomical number doesn’t even include things like airfare, hotel stays, meals, rental cars, etc.. which they will continue to incur as Easton’s primary Epileptologist is in Cleveland, Ohio. Even if they do find a treatment that works, they will need to return annually for follow up exams and testing.

Hearing this was their reality is what inspired me to create this GoFundMe.

I have witnessed the power of community and know if enough folks see this and can donate, we can meet (and hopefully exceed) this goal! If you find it in your hearts to support Easton and his family with their medical and travel expenses, it would be greatly appreciated! Even more importantly, if you could keep Easton and his family in your thoughts and prayers, I know they would be beyond grateful.

I plan to post monthly updates, and please reach out if you have any questions. Thank you!