Support Mike Aguilar's Fight for Life

Dear Friends,

With heavy hearts, we reach out to you for help. Our friend and colleague, Mike Aguilar, a devoted husband and father of four, was suddenly diagnosed with a nightmarish combination of life-threatening conditions: AL Amyloidosis, Nephrotic Syndrome, and Multiple Myeloma. These rare diseases have wreaked havoc on Mike's life.

A Sudden Onset of Confusing Symptoms

Prior to these shocking diagnoses, Mike was a very active and very healthy father of four - Kyle, Mikey, Hailey, and Kole (KJ). In less than three weeks, Mike went from going to the gym five days a week to not being able to get out of bed. He lost over 20 pounds in approximately eight days and stopped tolerating food. His wife and high school sweetheart, Heather, immediately began to chase answers.

They first went to HCA Trinity hospital where Mike had a thousand red flags in his labs but was dismissed as having pancreatitis. This nonsensical diagnosis cost Mike precious time. Over the next few weeks Heather scheduled appointments with any doctor or specialist who would see Mike, having labs and multiple tests run daily, all while trying to keep things relatively normal for the four kids.

On the morning of March 8, Mike’s condition had deteriorated to the point that his primary care doctor instructed Heather to rush him to Tampa General Hospital. Mike is still there, fighting for his life with Heather by his side, rarely leaving but for a few hours at a time. Neither can work and, with three children in college, Mike’s sudden illness has taken a devastating toll on their family finances.

Shocking Diagnoses of Rare Diseases

They began to get answers, and the diagnoses were shocking.

- Multiple Myeloma, a very rare bone marrow cancer that affects the plasma cells and currently doesn’t have a cure

- AL Amyloidosis, another rare, serious, and challenging-to-treat disease which results in abnormal accumulation of protein fibrils depositing in various tissues and organs, causing organ dysfunction and, eventually, organ failure

- Systemic Amyloidosis with involvement in Mike’s heart, kidneys, thyroid, eyes, and entire stomach (upper and lower intestine, colon, pancreas, liver, etc.)

- Nephrotic Syndrome in Mike’s kidneys resulting in massive fluid retention and spilling of proteins into the body.

Aggressive, Expensive, and (some) Experimental Treatments

Due to the severity and aggressive nature of Mike’s diseases, he began treatment within 12 hours of diagnosis. His current regimen, known as DaraCyBorD consists of Chemotherapies, Immunotherapies, Immunosuppressants and steroids. He receives this in four-week cycles, once a week on Saturdays. There are no breaks and cycles run consistently back-to-back. Mike has started his second cycle on April 13, 2024.

Mike requires a multitude of additional medications to treat post-secondary diseases and symptoms such as diabetes. His labs have been consistently critical requiring daily changes to keep him stable.

Some of Mike’s treatments are considered experimental and will not be covered by insurance, yet they are critical to keep him alive.

An Unbreakable Will to Live

Mike remains determined to fight with every ounce of strength he has. When asked if he had a DNR (Do Not Resuscitate). Mike, a former body builder who now, at times, can barely speak, whispered, “No, I have four kids, break my ribs.”

Next Steps in Mike’s Care

Mike is currently under the care of a world-renowned Multiple Myeloma specialist, Dr. Ivan Borrello. When Mike is stable enough, he will be moved to an Amyloid Center of Excellence where entire teams (Hematological Oncologist, Cardiologist, Nephrologist, Hepatologist and Gastroenterologist) who specialize in his rare combination of diagnoses, MM and AL Amyloidosis, can collaborate to save his life.

Heather’s Life-Saving Advocacy

Heather’s ability to spend countless hours studying Mike’s diseases and be present to advocate for proper care have had a tremendous impact on Mike’s current state. She jokes about the binder of information she brought to the hospital which included every lab report, test, and notes from previous appointments dating back years and years, color-coded, and organized for the doctors.

Heather’s meticulous documentation paid off. Miraculously, Mike’s diagnosing doctor shared that his ability to diagnose accurately was linked to a comment Heather wrote on a sticky note next to lab results from weeks earlier.

Mike’ family has seen changes from all directions. His older children have taken on adult responsibilities. Despite being full-time college students with part-time jobs, they’ve stepped up to run the household and care for their younger sibling.

How You Can Help

This is why we are turning to you, our community, for support. Together, we can ease the Aguilar’s financial burden, allowing them to focus on what truly matters – Mike’s health, well-being, and recovery.

Your donation will go towards Mike’s ever-increasing medical expenses, and, with neither Mike nor Heather working, to the family’s finances. Every contribution, small or large, will make a substantial positive impact on Mike’s journey towards healing.

Please, if you can, donate to Mike’s GoFundMe campaign and/or share his story with your friends, family, and networks. The further we can spread Mike’s story, the more we can help this family focus on what matters most, Keeping Mike Alive.

Let’s show Mike and Heather that they are not alone in this fight.

Sincerely,

Friends of Mike and Heather and the whole Aguilar Family

Help Raise Amyloidosis Awareness

The Aguilar’s want Mike’s story to bring attention and awareness to Amyloidosis. Many patients go undiagnosed until they are already experiencing congestive heart failure, kidney failure, and other catastrophic organ failures. When doctors and patients lack the information needed to diagnose this disease, families like the Aguilar’s suffer terrible losses.

Please take some time to familiarize yourself with AL Amyloidosis and Multiple Myeloma. Know the symptoms that could present, and, more importantly, learn the importance of advocating for yourself in a healthcare industry that can be so difficult to navigate.

By sharing Mike's story, you can help ensure it reaches people who may have encountered similar situations or who are unfamiliar with Amyloidosis.

Together, we can show Mike and Heather that they are not alone in this fight. Let's rally around Mike and his family as he fights to get back to the life he loves.

Sincerely,

Friends of Mike and Heather Aguilar