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Faith Over Fear - Aiden's Transplant Journey, 160 E Erie Ave, Philadelphia, PA (2026)

03/01/2026

March is Kidney Disease Awareness Month

July 16–17, 2009 will forever be etched in the hearts of our family. That was the night Melissa F. Manazer Hess and I learned that our son Aiden Hess had been diagnosed with IgA Nephropathy. What made his case even more rare and frightening was that his IgA was triggered by rapidly progressive glomerulonephritis (RPGN)—an acute nephritic syndrome marked by microscopic crescent formations in the kidneys and a progression toward renal failure within weeks to months. The damage from RPGN is irreversible. While Aiden never fully entered renal failure, he came as close as possible. By the grace of God and through the extraordinary compassion and skill of physicians and nurses—including Jonathan Heiliczer (Rebecca Sage Heiliczer) and Michael Kinney — Aiden achieved clinical remission. We remain forever grateful to these remarkable medical professionals, whom we are blessed to call friends.

Our gratitude also extends beyond measure to Vertie Lee, Michelle M Manazer-Legath, Thomas A. Hess, Marianne Hess, LuAnne Ciccarelli Gallin, Mary Webber, Father Keith Laskowski, and the countless family members and friends who became surrogate parents to our children and who carried us in prayer and love through our darkest hours.

While remission brought hope, Aiden’s journey with kidney disease did not end there. Years later, his kidneys could no longer sustain him, and our brave son began nightly dialysis. Each evening Aiden was connected to a machine that did the work his kidneys could no longer do—cleansing his blood, balancing fluids, and sustaining his life. Night after night, he endured the physical toll and emotional weight of chronic kidney disease with courage far beyond his years. Then, last May, we witnessed a miracle: Aiden received a kidney transplant. That gift of life restored not only his health but also his freedom—the freedom to live untethered from a machine, to plan for tomorrow, and to dream again. We remain profoundly thankful for the selfless donor and donor family who made this second chance possible.

IgA Nephropathy is one of the most underdiagnosed kidney diseases. It occurs when IgA—a protein that helps the body fight infections—builds up in the kidneys. These deposits interfere with the kidneys’ ability to filter waste and excess water from the blood. Over time, this can lead to blood and protein in the urine, high blood pressure, and swelling in the hands and feet.

The disease can appear suddenly but more often progresses slowly over many years, sometimes leading to end-stage kidney failure. By the time symptoms such as swelling, nausea, fatigue, headaches, and sleep problems appear, kidney function may already be critically compromised. When total kidney failure occurs, dialysis or a kidney transplant becomes necessary.

Although the exact cause remains unknown, we do know certain factors increase risk. IgA Nephropathy is twice as common in men as in women, often appears in people in their 20s and 30s, is more prevalent among Caucasians and Asians, and in some cases may have genetic links.

There is currently no cure. Because the disease varies greatly from person to person, predicting its course is nearly impossible. What works for one patient may not work for another. Once kidney damage occurs, it cannot be reversed. Treatment today focuses on slowing progression and preventing complications, often through blood pressure medications, immunosuppressants, omega-3 fatty acids, and vitamin E.

It is estimated that up to half of those diagnosed with IgA Nephropathy will eventually develop end-stage renal disease. At that point, the only options are dialysis or kidney transplantation. While a transplant can dramatically improve quality of life, there remains a critical shortage of donor kidneys—and even with transplantation, recurrence of the disease is possible.

Research is the answer—the only answer. Greater understanding of IgA Nephropathy will lead to earlier diagnosis, better treatments, and, God willing, a cure.

This month, please join us in praying for all those battling kidney disease, for those who have lost their fight, for the families who stand beside them, and for the researchers working tirelessly toward hope.

Pray for strength. Pray for healing. Pray for a cure!

02/28/2026

Today is Rare Disease Day. This day invites us into a deeper awareness of lives often lived outside the spotlight. By definition, rare diseases affect a small percentage of the population—but collectively, they impact millions of individuals and families worldwide. Behind every diagnosis is a person navigating uncertainty, complex medical systems, and daily challenges that many around them may never fully see.

One powerful example is Aiden’s battle with IgA nephropathy. IgA nephropathy is a chronic kidney condition in which an antibody called immunoglobulin A builds up in the kidneys, leading to inflammation and, over time, possible kidney damage. For many, it progresses unpredictably. Some experience mild symptoms; others face worsening kidney function, dialysis, or even transplant.

For Aiden and our family, the diagnosis did not simply introduce a medical term—it reshaped daily life. Appointments, lab work, medications, dietary adjustments, and constant monitoring became part of the routine. The future, once assumed, required new conversations and new resilience. Like many living with rare diseases, Aiden faces both the physical realities of his condition and the emotional weight of uncertainty.

One of the hardest aspects of living with a rare disease is isolation. Symptoms may be misunderstood. Diagnoses can take years. Treatment options are sometimes limited or evolving. Families often become researchers, advocates, and full-time caregivers out of necessity. The word “rare” can feel heavy—it can mean fewer specialists, fewer established treatment paths, and fewer people who truly understand the journey.

Rare Disease Day is a reminder that rarity does not diminish importance. Every life has inherent dignity and value, regardless of physical ability, prognosis, or productivity. A person is not defined by a diagnosis. Their worth does not fluctuate with lab results or medical charts.

Aiden’s story reflects something many in the rare disease community embody: resilience. Strength is not always loud. Sometimes it looks like showing up for another appointment. Taking another medication. Staying hopeful through another round of testing. Continuing to dream even while living with limits. Families, too, display extraordinary endurance—balancing advocacy, education, finances, and emotional care, often behind the scenes.

This day also calls the broader community to action:

• To listen to stories like Aiden’s with empathy and respect.

• To advocate for equitable healthcare access and responsible medical research.

• To support caregivers who often carry invisible burdens.

• To foster inclusive schools, workplaces, and communities where complex health needs are understood.

Advances in genetics, nephrology, and precision medicine are bringing new possibilities for conditions like IgA nephropathy. Continued awareness fuels funding, which fuels research, which fuels hope. Progress may be gradual, but every breakthrough begins with recognition that these lives matter.

“Rare” describes a condition—not a person.

Aiden is not rare in worth, courage, or potential. And neither is anyone else living with a rare disease. Rare Disease Day reminds us that behind every diagnosis is a story, a family, and a future worth fighting for.

02/23/2026

This week, our Nation pauses to “celebrate” National Rare Disease Week. For the many people who are members of this “team”, they live day by day fighting their own battles. Our son Aiden Hess is one of those people.

Aiden’s life has never followed the ordinary rhythm of childhood. Long before words like “career,” “independence,” or even “adulthood” were part of his vocabulary, there were other words—clinical words—whispered in exam rooms and spoken carefully across desks: protein levels, kidney function, biopsy, IgA Nephropathy. IgA nephropathy became part of our family’s language before we fully understood what it would mean.

In the beginning, it was subtle. A lab result slightly off. A follow-up appointment. Reassurances mixed with concern. Childhood continued—but with an undercurrent. While other families planned sports seasons and vacations without hesitation, we learned to plan around lab draws, nephrology visits, and medication schedules. There was always the quiet awareness that something inside Aiden’s body was fighting him.

IgA Nephropathy is unpredictable. It can smolder quietly for years, then suddenly advance. For Aiden, it was not a quick storm but a long siege. Through middle school and high school, his kidneys slowly lost ground. He carried on—brave in ways he probably didn’t even realize—while his body endured a battle he never chose.

As he grew into adulthood, the numbers told a harder story. Chronic kidney disease progressed despite every effort to slow it. Diet changes. Medications. Monitoring. Hope. Always hope. We lived between appointments—sometimes encouraged, sometimes deflated—but always moving forward because that is what families do when they love someone whose body is failing them.

Then came the words no family is ever ready to hear: complete renal failure. There is something devastating about watching a young adult face what most associate with old age. Dialysis was no longer theoretical—it was necessary for survival. For a year and a half, dialysis became part of Aiden’s daily rhythm. Machines. Lines. Time measured in treatments. Energy rationed carefully. Life rearranged around a process that kept him alive but reminded us constantly of how fragile life had become.

Dialysis sustains, but it also humbles. It exposes vulnerability in a way few other experiences can. And yet, in that season of darkness, something else became unmistakably clear: we were not alone.

Family surrounded Aiden with fierce love. Friends showed up in ways that still bring us to tears. Our extended medical team—nephrologists, transplant coordinators, nurses, technicians—became not just professionals but partners in survival. And our community carried us when we were too exhausted to stand on our own. During the long and uncertain search for a living donor, we were upheld by prayers, encouragement, and a generosity of spirit that we will never forget.

May 2025 marked a turning point. After waiting, hoping, and enduring, Aiden received his transplant. There are moments in life when gratitude is so overwhelming it feels almost sacred. The transplant was not merely a surgery; it was a gift of life. A second chance. A miracle wrapped in human generosity and medical expertise.

Aiden‘s living donor has chosen to remain anonymous. This angel will always be prayed for and celebrated by our family. We are humbled and honored that this person chose to give Aiden a part of themselves so that he can live. We are also humbled by this person‘s decision to remain anonymous and not reap any thanks or reward for their generosity. Our donor is known by God. God has seen what this donor has done in silence and will reward our angel when they go home to be with God. I am certain their eternal reward will be abundant.

Transplant is not the end of the story. It is a new chapter—one filled with hope but also vigilance. Even now, Aiden lives with daily awareness that rejection is possible. The same disease that took his native kidneys could return. It could attack the transplanted kidney. In rare and frightening scenarios, it could affect another organ. Immunosuppressive medications protect the gift he has received, but they also require constant monitoring and careful balance.

There is no such thing as carefree after transplant. There is joy—but it coexists with responsibility, discipline, and risk.

Aiden is extraordinarily well managed. His medical team watches him closely. His family continues to surround him with steadfast love. Friends remain faithful in encouragement. And our broader community—those who prayed, shared, advocated, and stood beside us—remains woven into this story of survival.

We are humbled beyond words by the compassion shown to us. Support during the darkest nights of dialysis, during the uncertainty of donor searches, during the waiting and the wondering—these were not small things. They carried us.

This week, as our nation observes National Rare Disease Week, we are reminded that Aiden’s story is one among millions. Rare diseases often isolate families. They introduce medical language that few understand. They demand resilience that no one volunteers for. They test faith, endurance, and identity.

And yet, they also reveal extraordinary strength—in patients, in caregivers, in medical professionals, and in communities. Rare disease is not simply a diagnosis; it is a daily reality. It is navigating insurance and research articles. It is weighing treatment options with limited data. It is living with uncertainty. It is celebrating stability as victory. It is understanding that “managed” does not mean “cured.”

If there is one thing Aiden’s journey has taught us, it is that suffering does not eliminate hope. It reshapes it.

Hope is no longer naïve optimism that nothing bad will happen. Hope is disciplined trust that even when illness persists, love persists more powerfully. Hope is found in the hands of surgeons, in the precision of medicine, in the generosity of donors, in the whispered encouragement of friends, in the steady presence of family.

We cannot predict what the future holds for Aiden. None of us can. Transplant life is a blessing, but it remains fragile. There are no guarantees—only grace for today.

So during National Rare Disease Week, we pause not only to reflect on Aiden’s journey—from childhood diagnosis to renal failure, through dialysis, and into transplant—but also to stand in solidarity with every family walking a similar road.

May we continue to raise awareness. May we continue to advocate for research. May we continue to support those whose diagnoses are rare but whose courage is immense.
May we never underestimate the power of community. And may we never forget that even in the shadow of chronic illness, life—precious, fragile, resilient life—continues to shine.

02/14/2026

On this National Organ Donor Day, my heart feels fuller than I ever thought possible.

May 2025 will forever be etched into our family’s story as the month that changed everything — the month Aiden received his life-saving kidney transplant. It wasn’t just a surgery. It wasn’t just a procedure marked on a calendar. It was the moment fear loosened its grip. It was the moment hope became tangible. It was the beginning of Aiden’s second chance at life.

This journey has always been about more than medicine. It has been about people — extraordinary people whose courage and compassion carried us through the darkest days.

Early in this process, when uncertainty felt overwhelming, one remarkable woman stepped forward: Cheyann Crisci. Cheyann is the embodiment of strength wrapped in kindness. When she offered to be Aiden’s living donor, she did so with open hands and an open heart. She was willing to endure testing, appointments, risks, and the emotional weight of the unknown simply because she wanted to help.

That kind of courage humbles you. That kind of compassion changes you.

Though circumstances ultimately led to a different donor being identified, Cheyann and her family became woven into our lives in a permanent way. You cannot share a journey like this and walk away unchanged. She showed us what selflessness looks like in action. She reminded us that goodness is real and that love sometimes shows up in the form of someone saying, “I’m here. I will do this for you.” For that, we will always carry deep gratitude in our hearts.

And then came the call from Temple University. They had found another donor.

An anonymous angel.

Someone who stepped forward quietly, without recognition, without applause, without ever knowing us personally — and gave Aiden the greatest gift imaginable.

To the person who gave Aiden his kidney:

There are no words that feel big enough. No thank you that feels adequate. You changed our son’s life. You changed our family’s life. You lifted a weight we had been carrying for so long that we forgot what it felt like to breathe without it.

Because of you, Aiden wakes up with strength in his body. Because of you, his laughter comes easier. Because of you, his future is wide open again — filled with possibilities instead of limitations. You may never see the milestones you made possible. You may never witness the quiet moments of relief we feel at each successful lab result. You may never hear the prayers of gratitude spoken for you in our home.

But please know this: you are loved. You are honored. You are thought of with overwhelming gratitude every single day.

Your selflessness is something we will carry with us forever. We will tell Aiden, again and again, about the extraordinary human being who chose to give so that he could live fully. Your courage is now part of his story. Your generosity flows through him. In the most literal and beautiful way, you are part of our family’s heartbeat.

We are still amazed. Still humbled. Still in awe that someone we may never meet would make such a profound sacrifice simply to help another human being live.

On this National Organ Donor Day, we celebrate you. We celebrate Cheyann. We celebrate every living donor who bravely steps forward and every individual who chooses to become a designated deceased organ donor.

Organ donation is not just a checkbox on a form. It is the gift of birthdays, holidays, graduations, and ordinary days that become extraordinary simply because they are lived. It is the gift of time — the most precious gift of all.

If you are considering becoming a living organ donor, know that your courage could transform a family’s entire future. If you have not yet registered as a deceased organ donor, please consider doing so. One decision can save a life. One act can ripple across generations.

We are living proof.

Because of Cheyann’s willingness.
Because of our anonymous angel’s selfless gift.
Because of the medical teams who made it possible.

Aiden has a second chance.

Today, we celebrate life.
We celebrate generosity.
We celebrate the quiet heroes among us.

And most of all, we celebrate a little boy thriving in May 2025 — strong, resilient, and full of possibility — because someone chose to give the ultimate gift.

From the depths of our hearts: thank you. You didn’t just save our son’s life.

You gave him his future.

01/28/2026

Today is National Gift of the Ladybug Day. National Gift of the Ladybug Day invites us to recognize the strength, courage, and resilience of children living with critical and chronic illnesses, as well as the families who walk beside them through every challenge.

The ladybug—small, bright, and resilient—has come to symbolize hope and perseverance. Its presence reminds us that even in the hardest seasons, moments of beauty and meaning still emerge. For children like Aiden, who has lived with kidney disease from a young age, life has been shaped by hospital visits, medical procedures, limitations others may never see, and the ongoing uncertainty that comes with chronic illness.

Growing up with kidney disease meant Aiden faced struggles far beyond his years—missed milestones, physical exhaustion, and the emotional weight of being different from his peers. Yet within those struggles grew remarkable strength. Like so many children with chronic illnesses, Aiden learned patience, resilience, and courage not by choice, but by necessity. His story reflects the quiet bravery found in countless children who endure more than most, yet continue to move forward with determination and heart.

This day also honors the families who support these children. Parents and caregivers navigate long nights, difficult decisions, and constant vigilance, often carrying their worries silently while advocating fiercely for their child. Their love is steady, their strength extraordinary, and their journey deserving of recognition and compassion.

National Gift of the Ladybug Day is more than awareness—it is a call to empathy and action. It reminds us that small gestures matter. A kind word, a thoughtful gift, a moment of understanding, or continued support can mean everything to a child or family facing medical challenges. Like the ladybug itself, small acts can bring great comfort and hope.

Above all, this day affirms that every child’s life has value, meaning, and worth—regardless of diagnosis or limitation. By honoring children like Aiden and acknowledging their struggles and strength, we celebrate not only survival, but courage, resilience, and the power of compassion.

On this National Gift of the Ladybug Day, may we choose kindness, stand with families facing childhood illness, and remember that even the smallest symbols can carry profound hope.

12/23/2025

On December 23, 1954, Dr. Joseph E. Murray and his surgical team at the Peter Bent Brigham Hospital in Boston performed what would become one of medicine’s most transformative breakthroughs: the first successful human kidney transplant. In that historic operation, a healthy kidney was donated by Ronald Herrick and surgically implanted into his identical twin brother Richard, who was dying from end-stage renal failure. The surgery lasted approximately five and a half hours and marked the first time a transplanted organ functioned successfully in a human recipient. Richard lived for another eight years with the graft before passing from unrelated causes — a profound milestone in demonstrating that organ transplantation could indeed save lives.

This landmark moment did more than save one life; it opened a new frontier in medicine. Murray’s success disproved the longstanding belief that immune rejection made organ transplant impossible. It laid the groundwork for immunosuppressive therapy, organ donation frameworks, and surgical protocols that would evolve over the ensuing decades. For his pioneering work, Murray received the Nobel Prize in Physiology or Medicine in 1990, recognizing how his contributions transformed the treatment of organ failure.

What Dr. Murray and his colleagues began in 1954 has blossomed into a medical standard of care that literally saves tens of thousands of lives annually.

• In the United States alone, over 27,000 kidney transplants were performed in 2023 — a record number — making kidney transplantation the most common solid organ transplant by far.

• Globally, there were over 111,000 kidney transplants in 2023, with continued growth in many regions as surgical techniques and donor programs expand.

These are not merely numbers, but individual lives restored: people freed from the daily drain of dialysis, children who grow up healthy, parents who can watch their families flourish, and adults who return to full participation in work and community. Every one of these transplants stands on the shoulders of that first operation in 1954.

For families facing renal failure today, Dr. Murray’s work is not just history — it is personal.

When Aiden received his kidney transplant earlier this year, he became part of a legacy that began with Richard and Ronald Herrick. Without that first successful operation and the worldwide commitment to building transplant science, it’s unlikely that Aiden’s transplant — or the thousands like his each year — would have been possible. Modern transplant medicine, with refined surgical approaches, sophisticated immunosuppressive drugs to prevent rejection, and meticulous donor-recipient matching, evolved directly from the foundation laid in Boston in 1954. The survival rates and quality of life improvements we see now reflect decades of clinical progress built on that pivotal first success.

It’s estimated that hundreds of thousands of people worldwide have had their lives extended and enriched through organ transplantation since Dr. Murray’s first operation. While some early figures cited more than 400,000 lives saved by transplant procedures by the early 2000s, the ongoing growth in transplant volume since then means that today’s cumulative impact is far larger, encompassing the countless lives touched by kidney, heart, liver, and other organ transplants.

Every successful transplant carries echoes of that first one — the courage of donors and recipients, the commitment of surgical teams, and the relentless pursuit of a medical breakthrough that has become a cornerstone of modern medicine.

On this 71st anniversary, we honor Dr. Murray, his team, and all the innovators who continued their work. We remember how one brave decision in Boston reshaped what medicine could do, turning hope into reality for millions. And we celebrate how that legacy made Aiden’s life-giving surgery possible — a testament to human ingenuity, compassion, and the enduring value of scientific progress.

12/11/2025

Update on Aiden’s Kidney Transplant Journey

We would like to share an important update on Aiden’s continued recovery and progress following his kidney transplant. Recently, Aiden underwent a scheduled kidney biopsy—one of the essential checkpoints in monitoring the health and stability of a transplanted organ. We have just received the results, and we are grateful to report several pieces of encouraging news. The biopsy showed no signs of rejection and no evidence that his underlying disease is reappearing. These two findings are tremendous blessings and answered prayers, especially given the challenges Aiden has faced throughout this long journey.

However, the biopsy also revealed an area of concern: microvascular inflammation. Although not a sign of rejection by itself, this condition requires careful attention and treatment to ensure the long-term health of his transplanted kidney.

Microvascular inflammation refers to irritation and immune activity within the tiny blood vessels of the transplanted kidney. These microvessels are crucial for delivering oxygen and nutrients that allow the kidney to function. When the immune system detects something unusual—or becomes overly activated—it can mistakenly target these microscopic blood vessels. If microvascular inflammation is left untreated, the ongoing injury can gradually damage the kidney’s ability to function properly. Over time, the continued stress on these small vessels may escalate into more severe forms of immune response, ultimately increasing the risk of chronic rejection or a decline in transplant health.

To prevent this, Aiden’s medical team has created a proactive and intensive treatment plan. For the next few months, he will undergo infusions at the hospital. This is a critical step toward preserving the gift of life that his transplant represents. After completing this course of treatment, Aiden will undergo another biopsy in 4 to 6 months to assess how well the inflammation has responded to the therapy and to ensure his kidney remains stable and healthy.

Throughout all of this, our family continues to place our trust in God’s mercy and healing. We pray daily to St. Padre Pio, asking for his intercession in God’s Heavenly Court—begging for continued protection, strength, and complete healing for Aiden. We know that Aiden’s progress is not only shaped by medical care but also lifted by the countless prayers offered for him.

From the bottom of our hearts, thank you for your continued prayers, love, and support. Your compassion sustains our family during these long and difficult months, and your faith strengthens ours. We remain hopeful, grateful, and steadfast as Aiden continues his journey toward full restoration of health.

Merry Christmas and have a blessed 2026!

The Hess Family

12/01/2025

Yesterday, St. Christopher’s Hospital for Children marked 150 years of service to Philadelphia’s children and families — a century and a half of bedside compassion, clinical innovation, and steady presence in our community. From its modest beginnings on November 30, 1875, as a charitable ambulatory pediatric clinic to the modern, full-service pediatric center at 160 East Erie Avenue, St. Christopher’s has grown with a constant vision: to place the needs of children first and to shepherd families through some of life’s most difficult moments.

The story of St. Christopher’s is a story of milestones: pioneering child-life and play therapy programs, cutting-edge neonatal and surgical advances, and early leadership in pediatric transplant and trauma care. Those milestones — measurable achievements in medicine and quiet acts of daily care — are woven into the hospital’s mission and into the lives of thousands of families across the region. As the hospital celebrates this sesquicentennial, it also looks toward the next 150 years with a renewed commitment to equity, research, and training the next generation of pediatric clinicians.

On a personal note: for our family, St. Christopher’s was not just an institution — it was where our son’s illness was recognized and treated with skill, patience, and humanity. When Aiden was first diagnosed, we were met by clinicians whose competence and compassion made an unbearable situation bearable. In particular we will always be grateful for Dr. Jonathan “Bowtie” Heiliczer, Michael Kinney, CRNP, and the entire team at St. Chris’s who cared for Aiden with such expertise and tenderness. Their careful work, clear communication, and steady presence were gifts to our family in a time of fear and uncertainty. (This gratitude comes from our family’s experience and the many ways the staff supported Aiden’s care.)

Celebrating 150 years is more than marking a date on the calendar; it is an invitation to remember every clinician, nurse, therapist, technician, volunteer, and volunteer family who has shaped the hospital’s character. It is a chance to thank those who have trained here and gone on to serve children across the nation, and to support the hospital’s work to remain a lifeline for vulnerable children in North Philadelphia and beyond. The recent anniversary commemorations — pep rallies, community events, fundraising efforts, and recognition of staff — have rightly centered the stories of patients and caregivers as the true heart of St. Christopher’s.

As we honor this milestone, we give thanks. We pray for the continued health and safety of the children served within those walls, for strength and encouragement for the hospital’s staff, and for wisdom for the leaders who will guide St. Christopher’s into the future. May this institution continue to be a place where science and mercy meet — where children are healed, families are supported, and hope is restored.

A short prayer of thanksgiving -

Heavenly Father, we give You thanks for the gift of St. Christopher’s Hospital for Children and for 150 years of compassionate care. Bless the physicians, nurses, staff, volunteers, and all who labor there. Renew their strength, deepen their compassion, and guide their hands. Comfort the children and families who come seeking help; grant healing where it is needed and peace where it is sought. May St. Christopher’s continue to be a beacon of hope for generations to come. Amen.

Faith Over Fear - Aiden's Transplant Journey

03/01/2026

02/28/2026

02/23/2026

02/14/2026

01/28/2026

12/23/2025

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