Coming Home Was Both a Blessing and a Heartbreak

After surviving a life-threatening medical complication and spending nearly 11 months in the hospital, Hailey is finally home—but her fight for her life and her future is far from over.

Hi, my name is Hailey, and this is my story.

For the past seven years, chronic illness has changed my life, challenged my dreams, and forced me to rebuild more times than I can count. Still, every time I've been forced to start over, I've found a way to keep moving forward.

The week of my 16th birthday in 2019, I developed Guillain-Barré Syndrome (GBS), a rare autoimmune disorder that attacked my nervous system and left me paralyzed from the mid-chest down. Although I have since regained some sensation and movement in my lower body, I remain unable to walk.

What began as a single diagnosis quickly became a series of life-altering medical challenges. The effects of the illness extended far beyond paralysis, contributing to complications that affected multiple parts of my body and ultimately changing the course of my life in ways I never could have imagined.

The years that followed were not easy, but they were not without joy either. I spent countless hours in physical therapy, adapted to life with a disability, made lifelong friends, pursued my education, and continued searching for the life I wanted to build. There were setbacks, hospitalizations, and challenges along the way, but there were also victories—big and small—that reminded me life was still worth living.

No matter how many times my plans changed, I kept finding new ways to move forward.

Then, in 2023, I developed neurological meningitis, a severe infection affecting my brainstem and spine. The infection progressed to septic shock and nearly took my life. After months of recovery, I once again found myself starting over and trying to regain what I had lost.

But I kept going.

Then, on September 5, 2025, everything changed again.

What was supposed to be a routine procedure became the beginning of the most difficult chapter of my life.

Because of severe gastroparesis, a condition that slows the movement of food through the stomach, doctors recommended placement of a feeding tube directly into my stomach and small intestine.

During the procedure, my bowel was perforated. What followed was a devastating chain of complications, including severe peritonitis, sepsis, septic shock, emergency surgeries, and months of life-threatening complications.

I spent the months that followed in hospitals fighting to survive.

There were multiple moments when my family was told to prepare for the possibility that I might not make it.

Through every surgery, every setback, every infection, and every impossible day, I kept going.

And I survived.

In June 2026, after nearly 11 months in the hospital, I finally came home.

Coming home should have felt like the finish line.

Instead, it was both a blessing and a heartbreak.

September 5, 2026 marked one year since the procedure that changed the course of my life. Even after all this time, I am still living with its consequences.

I am currently bedbound because of the complications I experienced. Severe peritonitis caused extensive internal scarring and adhesions, leaving my organs abnormally adhered to one another and the surrounding tissues. This creates a physical limitation that prevents me from sitting upright without severe pain. The independence I spent years fighting to regain has once again been taken away.

Since coming home, my family and I have been facing the financial reality of what recovery looks like outside the hospital. The cost of my ongoing care has placed a significant financial burden on my family, including medical equipment, caregiving support, transportation, home accommodations, medical supplies, rehabilitation, medications, and other necessary expenses that insurance does not fully cover.

These are not expenses we can simply put on hold. They are part of what I need to have a chance at healing, moving forward, and getting back to the life I have spent years working toward.

I am still fighting not only for the life I have today, but for the little girl who once dreamed about her future and the woman I still hope to become.

And I know I have never had to carry that hope alone.

The people who have helped me throughout this journey have carried more than I could ever ask of them. Watching what this has done to the people I love has been one of the most painful parts of this journey. My parents and my family have spent years advocating for me, caring for me, supporting me, and helping me survive.

My friends have driven hours to sit beside my hospital bed, celebrated birthdays in the hospital with me, decorated hospital rooms, and reminded me who I was on the days I struggled to remember.

I’ve also been incredibly grateful for the support of the people who have come into my life throughout this journey, both in person and online. Their friendship and kindness have carried me through some of the darkest moments of my life.

I would not be here without them.

I also have to remember that I wouldn’t be here without me either.

Somewhere in all of this, I have had to learn that this is not just my family’s story, but mine too—a truth I think I forget sometimes. So much of this year has been spent worrying about the people around me and what this has cost them that I sometimes forget to acknowledge what it has cost me.

I have had to grieve the things this illness and its complications have taken from me—the time, the plans, and pieces of the life I once imagined for myself.

But I have not let go of what comes next.

Maybe moving forward begins with admitting that I can’t do this part alone.

Asking for help is one of the hardest things I have ever done. But after everything my family and I have carried, I am asking for help because I don’t want this chapter to be the end of my story.

I don’t know exactly what the road ahead looks like, but I know I am not ready to give up.

If you are able to donate, share this fundraiser, or simply support my family and me along the way, thank you.

Thank you for taking the time to read my story, and for any support, encouragement, or kindness you choose to give. It means more than I can put into words.

With love and gratitude,

Hailey Coben