Ashton Caleb Shirrell

💜His Fight Is Our Fight: Ashton Against Epilepsy — Fighting for More Life, More Hope, and More Tomorrows💜

Our family is asking for help as we continue fighting for our son, Ashton Shirrell, and his future. We are raising funds to help him return to Mayo Clinic in Rochester, Minnesota, for specialized epilepsy care, extensive testing, and potential treatment, along with the significant medical, insurance, travel, and lodging expenses that come with this journey.

Ashton’s Story

Ashton is our youngest son, a 22-year-old young man whose battle with epilepsy began when he was just 16 years old. At an age when most teenagers are enjoying school, friendships, and growing up, Ashton and our family were suddenly faced with a frightening and life-changing medical journey.

His condition has developed into a rare, complex, drug-resistant, progressive, and terminal form of epilepsy involving widespread areas of his brain. Despite numerous medications, extensive testing, invasive brain monitoring, and previous brain surgery, his seizures have remained difficult to control and his condition has continued to deteriorate.

But Ashton is so much more than his diagnosis.

He is a very bright and intelligent young man who loves science, especially astronomy, the planets, stars, and everything involving outer space. He knows so much about these subjects that he regularly teaches his mom and dad things we never knew! He loves playing video games and watching Marvel movies with his two best friends, listening to all genres of music, being outdoors, and fishing with his dad and brothers. He also enjoys spending time with his niece and going out to dinner with his parents and family.

These are the moments and simple pleasures we want him to have more opportunities to enjoy.

His Medical Journey and Why We Need Mayo Again

In 2023, Ashton underwent an extensive medical journey at Mayo Clinic in Rochester, Minnesota. He spent approximately 10 days undergoing stereo-electroencephalography (SEEG), which involved surgically implanting electrodes inside his brain to monitor and better understand his seizure activity.

Following that evaluation, he underwent brain surgery in April 2023, during which part of his right temporal lobe was removed in an attempt to reduce his seizures.

For a while, we saw improvement, and we were hopeful that things were finally getting better. Unfortunately, that improvement did not last.

Over the past couple of years, his seizures have gradually increased, with a particularly concerning decline over the past year.

Today, Ashton struggles with daily seizure activity and symptoms that often leave him extremely sick, especially in the mornings, with significant nausea and vomiting. He also experiences worsening vision issues and problems with balance and coordination, resulting in multiple recent falls.

In addition to his daily struggles, he continues to experience larger seizures, some during the daytime but mostly while sleeping. These seizures can leave him extremely sore throughout his body, memory loss, and with a sore tongue and inside of his mouth from biting it during the seizure on the following day. There are also serious concerns about the risks associated with his nighttime seizures, including potentially life-threatening complications such as SUDEP (Sudden Unexpected Death in Epilepsy).

We have reached a point where getting Ashton back to Mayo is incredibly important. We need specialists experienced in complex, drug-resistant epilepsy to reevaluate his condition, determine what has changed, and explore what treatment options may still be available.

We are fighting for answers, better seizure control, and the opportunity to protect his future.

Why We Need Your Help

One of our biggest obstacles is the financial burden of getting Ashton the specialized care he needs.

Ashton currently has Indiana State Medicaid, which is not accepted for the specialized out-of-state care he needs at Mayo Clinic in Minnesota. To pursue this care, we will need to add him to his father’s employer-sponsored health insurance plan, which will cost more than $8,900 in additional premiums for the year.

Even with that insurance, we anticipate thousands of dollars in additional out-of-pocket medical expenses, including deductibles, copays, testing, procedures, and other costs not covered by insurance. We experienced these expenses during his previous Mayo journey and know how quickly they add up.

Because we live in Indiana, getting to Mayo also means significant travel expenses. Funds raised will help cover:

• Additional health insurance premiums to make his Mayo care possible.

• Medical deductibles, copays, testing, procedures, and other out-of-pocket expenses.

• Gas, transportation, and rental vehicles for reliable travel.

• Airbnb or other lodging during appointments, testing, and potentially extended stays.

• Food and everyday necessities while away from home.

• Travel expenses for his father, two brothers, and his sister-in-law to join us in Minnesota. This is so we can be together as a family if another major or risky brain surgery becomes necessary.

Most routine trips will likely involve Ashton and his mom traveling together. However, if major surgery or another significant procedure becomes necessary, we want his dad and brothers to have the ability to be there with him.

We are pursuing every available insurance and financial assistance option, but the reality is that this journey will involve expenses our family cannot manage alone.

We do not want finances to stand in the way of Ashton receiving the specialized medical care he deserves.

What We Are Fighting For

Our goal is to give Ashton a better daily quality of life and the best possible opportunity for a longer life.

We want fewer seizures, fewer sick days, better seizure control, improved safety, and more opportunities for him to enjoy the things he loves. We want him to be able to spend time with his friends and family, go fishing, enjoy his music, explore his love of science, and make memories without epilepsy controlling so much of his life.

We understand there may not be a cure, and we know there may be difficult decisions and additional procedures ahead. But we are not ready to give up looking for answers or exploring every reasonable treatment option.

We want Ashton to have more good days, more independence, more time with the people who love him, and more opportunities to experience life beyond his diagnosis.

We don’t want epilepsy to win. We want Ashton to have the chance to keep living his life.

How You Can Help

Asking for help does not come easily to our family, but when it comes to our son’s health and future, we are willing to put our pride aside.

If you are able to donate, every contribution, no matter the amount, will help us move closer to getting Ashton the care he needs.

If you are unable to donate, we ask that you please share his story with your family, friends, coworkers, and local businesses. You never know who might see his story, be able to contribute, or connect us with someone who can help.

Most importantly, please keep Ashton in your thoughts and prayers as we navigate this next chapter.

From the bottom of our hearts, thank you for taking the time to read his story, for caring about his journey, and for helping our family continue this fight.

Our fight is his fight. We are fighting for more life, more hope, and more tomorrows for Ashton.

With love and gratitude,

Ashton’s Family

💜 #AshtonStrong 💜