Carter’s Story: Our Fight for Answers, Hope, and a Future

I’m reaching out as a mother with a heart full of love, hope, and determination for my son, Carter.

For the past three years, our family has been living through a medical nightmare that has completely changed our lives. What started as searching for answers has turned into countless hospital admissions, emergency situations, surgeries, procedures, blood work, scans, specialist appointments, and ongoing testing — all while still not having a definitive diagnosis that explains why my little boy’s body continues to fail him.

Over and over again, we have faced the heartbreak of being turned away because Carter’s case was considered “too complex” or “too much.” We have traveled from hospital to hospital, searching for doctors willing to keep digging for answers while watching my son continue to suffer physically, emotionally, and mentally.

And unfortunately, as much as I wish I could say things have gotten better, our journey has taken a turn that no mother could ever prepare herself for.

### Where Carter’s Health Stands Today

In May 2025, after nearly a year of unexplained vomiting, weight loss, and worsening symptoms, Carter was hospitalized with a hemoglobin level of just 5. Doctors discovered a large ulcer in his esophagus that had been causing significant bleeding. He required a blood transfusion and an iron infusion.

That was only the beginning.

Carter was initially diagnosed with severe gastroparesis, and a GJ feeding tube was placed to help sustain him. What we thought would be a step toward getting our little boy healthy again quickly became the beginning of an entirely different life.

Since then, Carter has undergone countless procedures, hospitalizations, and medical interventions. We have faced complications involving his gastrointestinal system, his heart, blood clotting, and neurological symptoms, including seizures that have required further testing and evaluation.

In January 2026, Carter's condition deteriorated significantly. On January 29, he became unable to eat normally, and since then, he has only been permitted tiny tastes of food under medical guidance.

Imagine being six years old and watching everyone around you enjoy a meal, knowing you cannot sit down and eat alongside them. Imagine having to explain to your child why something as simple as a slice of pizza, a birthday cake, or a favorite snack is no longer something his body can safely handle.

As his mother, there are moments when I would give absolutely anything just to watch him sit at the dinner table and eat without pain, fear, or consequences.

In February, Carter was hospitalized at NewYork-Presbyterian Weill Cornell, where we finally found specialists willing to take a deeper look into his increasingly complicated medical condition. During that hospitalization, doctors identified additional gastrointestinal complications, including pseudo-obstruction and bacterial overgrowth.

But even with the incredible efforts of the medical teams who have helped us along the way, Carter's condition has continued to progress.

He developed blood clots requiring twice-daily blood thinner injections. He has experienced concerning heart rhythm abnormalities, and he continues to undergo neurological evaluations for seizure activity.

In May 2026, we brought Carter home on life-sustaining total parenteral nutrition (LS-TPN), a form of life support that delivers essential nutrition directly into his bloodstream.

My little boy now depends on machines, medical equipment, specialized feeding support, medications, and constant monitoring just to maintain his stability.

Our home has become an extension of the hospital.

I am not only his mother anymore. I am his caregiver, his advocate, his nurse, his voice, his comfort, and the person responsible for making sure every aspect of his medical care is managed safely.

Because Carter is immunocompromised, even everyday illnesses can pose serious risks. Our family has had to make difficult decisions about visitors, social interactions, and the things most families never have to think twice about.

His childhood has become centered around medical equipment, appointments, surgeries, and survival.

And through it all, he is still just a little boy who wants to play, laugh, make friends, go to school, and experience the world the way every child deserves to.

### The News That Changed Everything

After months of advocating, researching, and pushing for more answers, Carter recently underwent additional gastrointestinal testing to determine whether medications could help his digestive system function.

Unfortunately, the results were not what we had hoped for.

His gastrointestinal specialist has now confirmed that Carter’s intestines are paralyzed.

Doctors have explained that they cannot determine whether the underlying problem originates in the nerves or the muscles because his intestines have gone so long without functioning normally, and the testing available to us in New York cannot provide the answers we need.

During his most recent motility procedure, medications were tested to see whether they could stimulate his intestines. Unfortunately, he did not respond to them.

His medical team is not optimistic that medication will be successful, but I have advocated for us to attempt additional treatment before moving forward with an irreversible surgery.

The alternative we are now facing is devastating.

Doctors have discussed the possibility of needing to remove portions of Carter’s intestines and create an ostomy, allowing waste to leave his body through a surgically created opening into a bag.

We have been told that if his intestines continue to deteriorate, leaving severely compromised bowel inside his body could put him at risk of life-threatening complications, including sepsis and septic shock.

There is no putting those organs back once they are removed.

And while I understand that surgery may eventually be necessary to save my son's life, I need to know that we have exhausted every reasonable opportunity to preserve his organs before taking a step that cannot be undone.

I know there may come a day when I have to make that decision. But until then, I am going to keep fighting for every possible option.

Because he deserves that chance.

### Our Next Chapter: Moving to Philadelphia

Another heartbreaking reality we are now facing is that we have reached the limits of the specialized care available to Carter here in New York.

We have spent years searching for answers, consulting specialists, and traveling between medical institutions, but Carter’s needs have progressed beyond what the doctors and resources available to us in New York can adequately address.

His care will now need to transition to the Children's Hospital of Philadelphia (CHOP), where we hope to find the advanced testing, specialized expertise, and treatment options necessary to continue fighting for his life and quality of life.

This means that within the next year, Carter and I will need to relocate from New York to Philadelphia.

Just the two of us.

I will be leaving behind the home, family, friends, and support system we have built our lives around because my son's medical needs leave us with no other choice.

I have to figure out how to find housing, relocate his medical care, transfer insurance and benefits, coordinate his education, establish new doctors, and ensure that his life-sustaining treatments continue without interruption.

And I have to figure out how to financially make all of that happen.

All while continuing to care for a medically fragile six-year-old who relies on me for nearly every aspect of his daily life.

I never imagined that keeping my child alive would eventually mean having to uproot our entire world.

But if moving to Philadelphia gives Carter access to the care and answers we have spent years desperately searching for, then that is exactly what I will do.

I would move mountains for my son.

And if I have to move our entire life to another state to give him a fighting chance, I will.

### The Financial Reality We Are Facing

Throughout this journey, I have lost my ability to maintain consistent employment because Carter requires constant care, frequent appointments, hospitalizations, and medical interventions.

As a single mother, there is no second income to fall back on.

There is no way to simply take a few days off when he is hospitalized, because sometimes those hospitalizations last weeks. There is no way to plan a normal work schedule when his medical needs can change at any moment.

Between ongoing medical bills, medications, supplies, insurance complications, travel expenses, and the everyday costs of caring for Carter, the financial burden has become overwhelming.

Our previous GoFundMe donations have helped us get through some of the hardest moments of this journey, and I cannot begin to express how grateful I am for every single person who has supported us.

But those funds have now been exhausted, and we are entering what may be the most financially demanding chapter of our lives.

We are now facing not only Carter's continued medical expenses, but also the enormous cost of relocating to Philadelphia.

Your donations will help us with:

* Ongoing medical bills, medications, and specialized medical supplies.

* Travel to and from Philadelphia for appointments, procedures, and hospitalizations.

* Securing housing near the Children's Hospital of Philadelphia.

* Moving expenses and the costs of transitioning our lives from New York to Pennsylvania.

* Everyday living expenses while I remain Carter's full-time caregiver.

* Unexpected medical emergencies and the financial challenges that come with caring for a child with complex, life-threatening medical needs.

I am doing everything I possibly can to build a future for us while keeping Carter's medical needs at the center of every decision.

But I cannot do all of this alone.

### Beyond the Diagnosis: Carter Is More Than His Medical Conditions

Through this journey, I started the Beyond the Diagnosis Project because I wanted the world to see my son for who he is, not just what he is going through.

Carter is so much more than hospital bracelets, feeding tubes, IV lines, medical equipment, and a chart full of complicated symptoms.

He is funny, goofy, creative, loving, and full of personality. He loves superheroes, movies, video games, science, arts and crafts, and making the people around him laugh.

He is a little boy with big dreams, a contagious smile, and an entire life ahead of him.

And I refuse to let his medical journey be the only story the world knows about him.

Beyond the Diagnosis began as a way to share Carter's story, raise awareness, and help support his medical journey. My hope is that one day it will grow into something that can help other families raising children with complex medical conditions who are still searching for answers.

Because no family should have to feel as alone as we have felt throughout this journey.

Every purchase, donation, share, and message of support helps us continue moving forward.

### From One Mother to Anyone Reading This

There are nights I sit beside Carter, listening to the machines keeping him stable, wondering what tomorrow is going to bring.

There are days I have to explain things to my six-year-old that no child should ever have to understand.

There are moments when I have to hold myself together through conversations about organ removal, life support, blood clots, surgeries, and life-threatening complications, only to turn around and smile at my son because he needs to know that his mommy is still hopeful.

And there are moments when I am absolutely terrified.

Not because I am giving up.

But because I know how much we have already fought through, how much more we may have ahead of us, and how desperately I wish I could take every ounce of this pain away from him.

I cannot give Carter a normal childhood right now. I cannot promise him that the next procedure will be the last one, that the next doctor will finally have all the answers, or that we will never have to face another heartbreaking decision.

But I can promise him that I will never stop fighting.

I will continue searching for answers. I will continue advocating for him when the answers are not good enough. I will continue making impossible decisions, finding new doctors, and doing whatever it takes to give him the life he deserves.

My son deserves a future that is bigger than hospital rooms, machines, and medical uncertainty.

He deserves to grow up.

He deserves to experience all the little things that other children get to do without a second thought.

He deserves to be Carter — not just a patient.

I am asking for your help in making that possible.

Whether you are able to donate, share our story, support Beyond the Diagnosis, or simply keep Carter in your prayers, please know that it means more to us than words will ever be able to express.

Every dollar helps us get closer to the care he needs. Every share helps his story reach someone new. Every prayer reminds us that we are not walking this road alone.

From the bottom of my heart, thank you for standing beside my little boy and me through the hardest chapter of our lives.

We still have hope.

We still believe there are answers out there.

And no matter where this journey takes us next, I will never stop fighting for my Bean.

With all our love and gratitude,

Alyssa & Carter Bean

Beyond the Diagnosis Project

[www.thebtdproject.com](http://www.thebtdproject.com)