Today, September 26, marks what would have been Meghan Ashley Mackey’s 39th birthday. As we also approach the 30th anniversary of her passing on March 30, 2026, I want to share the story of her life more fully so that everyone knows who she was, the challenges she faced, and the inspiration she left behind.
Who Was Meghan?
Many of you are wondering, “Who was Meghan Mackey?” While some of you know her name and have heard me or my mom share brief stories about her life, very few have heard the full picture of who she truly was. Meghan was more than a child with medical challenges—she was a sister, a daughter, and a fighter who brought joy, love, and determination into every moment of her nine and a half years. I believe it is time that everyone hears her story in full, so that her memory and spirit can continue to inspire others as much as they have inspired me.
On September 26, 1986, in Naperville, a suburb of Chicago, Illinois, Meghan Ashley Mackey was born. What should have been a time of pure joy for my parents quickly turned into one of fear and uncertainty. Shortly after her birth, they discovered that she had a serious congenital heart disorder called Hypoplastic Left Heart Syndrome (HLHS). With this condition, her heart was missing the left ventricle—the critical chamber responsible for pumping blood out to the rest of the body.
Almost immediately, Meghan’s survival depended on medical intervention. She needed surgery and blood donations to give her even a chance at life. The only person who exactly matched her blood type was a close family friend named Brian Chapman, whose generosity became a lifeline for her. The doctors performed a surgery, still considered new and experimental at the time, to re-route the blood flow within her tiny heart. Because of the complexity of her condition and the uncertainty of the procedure, the doctors predicted she wouldn’t live longer than a month.
From the very beginning, Meghan was a fighter. Every day of her life was marked by challenges that would have overwhelmed many, yet she faced them with a spirit far stronger than her small body. Her life was not defined by her medical conditions, but by the joy, courage, and determination with which she met them. Meghan taught those around her what it meant to persevere, to smile in the face of uncertainty, and to embrace life fully despite the obstacles.
Growing Up Together
Fast forward to July 11, 1988, when I was born with my own complications. I entered the world with a defective colon caused by a disease called Hirschsprung’s, which required its own medical attention and care. My arrival brought its own set of challenges for my parents, who were already balancing the demands of raising Meghan with her health condition. As a gesture of gratitude to our family friend who had donated his blood to help save Meghan’s life, my parents gave me the name Brian, ensuring that his kindness and sacrifice would always be remembered within our family.
Over the years Meghan continued to prove the doctors wrong about her longevity. She was stubborn and determined, qualities that benefitted her greatly and helped her defy the odds time and time again. Unlike most babies, Meghan never cooed or made playful sounds (except crying—she was colicky, so I was told), which worried my parents at first. To help her communicate, Mom created a special picture book filled with places around town, foods she liked to eat, and photos of her classmates. Meghan would point to these pictures to let us know what she wanted, and over time she also learned to use basic sign language. Finally, around age five, she began to talk. It seemed as though all the conversations, thoughts, and desires had been stored up inside her mind, and at last she was able to share them with the world.
As kids, we were inseparable. We loved to play with the pots and pans in a musical parade, marching through the house as if we were leading a grand band. We had a Little Tykes kitchen set with plastic food, and we took turns pretending to be the chef and the server. We would carefully take food orders from our parents and proudly deliver the meal after “cooking” it at the play stove, laughing the entire time. We also loved the Disney afternoon show and, of course, Disney movies, often quoting lines or singing along to our favorite songs together.
Those small moments may seem ordinary, but they became extraordinary memories for us—treasures that I hold close to this day. They revealed Meghan’s playful personality, her sense of imagination, and her love of life. Even when her health created limits most children never faced, she never let those limits define her joy.
Challenges and Joys
Through the years, Meghan had various tests and procedures to keep her heart functioning properly, which meant frequent hospital visits and extended stays. During those times, our family often stayed at the Ronald McDonald House, where Meghan especially loved spending time in her favorite tree house. It became a place of comfort and joy for her in the midst of medical uncertainty. The staff and volunteers there came to know her well, treating her not just as another patient’s sibling but as a bright and resilient young girl who brought smiles wherever she went.
As Meghan got older, she started using oxygen and couldn’t go far from her oxygen tanks. I even learned how to carry the portable tank for her at times, proud to help her in whatever way I could. It became a part of our daily routine, and though it was a reminder of her health challenges, it also deepened the bond we shared. I loved being her brother, not just because of the fun and laughter we had together, but because I felt honored to support her in both the big and small ways that mattered.
Besides our internal defects, Meghan and I were born with other very similar characteristics. We were both born with at least one extra finger and/or toe, we had speech impairments, developmental delays, and other shared traits that seemed to bind us even closer together. These similarities often made me feel that Meghan and I understood one another in ways that went beyond words, as though we shared an unspoken connection rooted in both our struggles and our strengths.
I don’t remember what year it was, but Meghan was granted a wish by the Make-A-Wish Foundation. And of course, her wish was to go to Walt Disney World—the most magical place she could imagine! She got to see some of her favorite Disney characters—Ariel from The Little Mermaid, Belle from Beauty and the Beast, Darkwing Duck from the TV show Darkwing Duck, and her ultimate favorite, Snow White from Snow White and the Seven Dwarves. If you didn’t notice from my mom’s email address, you will note that they had one big thing in common: they both love Snow White! That shared love became yet another thread that tied Meghan to our family in ways that remain present even now.
I can still picture Meghan dancing in her wheelchair to the Darkwing Duck song, her laughter echoing as people stopped to watch and smile. We roamed the streets of Disney World as Meghan had her picture taken and collected autographs from all of her favorites. For those few days, every corner of the park seemed to sparkle just a little brighter because of her joy. We stayed at Give Kids the World, a place designed to make children with serious illnesses feel special, and Meghan was treated like royalty the entire time we were there. She cherished every moment, and so did we.
That trip was more than just a wish fulfilled—it was a celebration of who Meghan was: joyful, radiant, and unafraid to embrace the magic around her. For our family, it became one of the most treasured memories of her life, a reminder that even in the face of great challenges, Meghan’s spirit could shine brighter than anything else.
Saying Goodbye
Shortly after that trip to Disney, Meghan went into the hospital again. This was a follow-up procedure from her initial heart surgery almost ten years prior. The procedure was supposed to improve her heart function and give her more strength. After a two-day surgery, the doctors reported that everything had gone as planned. But despite the success of the operation, Meghan unfortunately never woke up.
What followed was a long and difficult month’s stay in the ICU, filled with uncertainty and heartbreak. Meghan faced many complications, and one by one, her body began to fail her. Every day my parents prayed for a miracle, clinging to hope that she would open her eyes and smile again. The nurses and doctors did everything they could, but the outcome we feared most became harder to deny. Finally, my parents were faced with the hardest, most gut-wrenching decision of their lives: to take her off life support and let her rest.
Meghan died on March 30, 1996, at the age of nine and a half years old. That was much longer than what the doctors originally predicted. First, they said she might not live a month, then a year; but she proved them wrong nine and a half years later. Mom even thinks she is written up in a medical journal somewhere, because her case was such a remarkable example of resilience and strength.
Though her time with us was far too short, Meghan’s courage and resilience continue to inspire me and all who knew her. She showed us that life is not measured by the number of years, but by the depth of love, joy, and determination lived within them.
After Meghan
After Meghan’s death, my dad lost his job in Illinois, but soon after he was able to secure a new position in New Jersey. So, in late December of 1996, our family packed up and left behind our home, our friends, and all the people who knew about Meghan and her story. The move was bittersweet—difficult because it felt like we were leaving a part of her behind in Illinois, yet necessary as we sought stability and a fresh start. Even though New Jersey brought us new schools, neighbors, and routines, Meghan’s memory traveled with us, shaping how we approached each new chapter of our lives. We lived in New Jersey until April 2018, and throughout those years, the lessons we had learned from Meghan remained at the heart of our family’s resilience.
In the spring of 1997, my parents began noticing the first major clues that I had difficulty with my eyesight. I was always a little uncoordinated and lacking a sense of balance (I never learned to ride a bike without training wheels because of it). The signs became undeniable one afternoon while playing catch in the back yard. I had trouble finding a bright yellow Nerf football that had been thrown to me and landed right by my feet! That simple moment led to many visits to different eye specialists as my parents searched for answers. Finally, in August of 2000, a resident at the University of Penn Hospital diagnosed me with a rare eye condition called Bardet Biedl Syndrome. Hearing the diagnosis was overwhelming, but at least it gave a name to the challenges we had been facing.
Not until 2002 did we discover the National Federation of the Blind (NFB), an organization that we now lovingly call our second family. The Federation gave us community, strength, and hope, teaching us that blindness does not define us and that expectations can always be raised. Through the NFB, we found purpose and empowerment, just as we had once found courage and determination through Meghan’s example.
Looking back, my parents strongly suspect that Meghan may have had the same eye condition as I did, since we shared so many other Bardet Biedl characteristics such as extra fingers and toes, developmental delays, and vision-related challenges. Unfortunately, because medical testing was not as advanced during Meghan’s lifetime, we will never know for sure. Still, the similarities we shared make us believe that Bardet Biedl Syndrome may have been a hidden thread connecting us in ways beyond what we already knew—a link that further bound our journeys together.
Joe Ruffalo (July 6, 1949 – May 3, 2022) and Carol Castellano might have been the first Federation members in my life, but they were not the first who embodied its philosophy. Looking back on my sister’s life, I now realize that she was the first person in my life who embodied the NFB’s philosophy. In her short life, she raised expectations with her heart doctors simply by living as long as she did, and she lived the life she wanted to the best of her ability. She played, laughed, learned, and grew as if nothing at all was wrong with her; even till the end.
Remembering Meghan
So, every March 30 and September 26, my parents and I remember Meghan in a simple yet meaningful way—by having her favorite sandwich for dinner, grilled cheese. It may seem like an ordinary meal, but for us it carries extraordinary significance, connecting us back to the joy and comfort that Meghan found in the little things.
For a third-grade project, we each wrote a story and it was published in book form. I chose to write about Meghan and drew pictures to go along with it. I used to take this book into class each year to read and share, helping my classmates get to know my sister and keep her memory alive. Sometimes we bring that book out and set it by Meghan’s picture, using it as a way to reflect and to honor her life.
Starting this year, I would like to invite you to join us in remembering Meghan by having a grilled cheese sandwich in her memory. Some of you might even be inclined to add a bowl of tomato soup with it—another comfort food that pairs perfectly. It’s a small gesture, but one that brings people together in love and remembrance, ensuring that Meghan’s spirit continues to touch lives beyond our family.
In 2026, we will mark the 30th anniversary of Meghan’s passing on March 30—a milestone that is both difficult to imagine and deeply meaningful. Three decades have gone by since we said goodbye, yet her presence continues to be felt every day through the memories, lessons, and love she left behind.
If you ever go to the Magic Kingdom at Walt Disney World and walk on the brick walkway heading from the pier towards the Grand Floridian, you will come across a brick bearing Meghan’s name. Among the thousands of bricks, hers stands as a quiet but powerful reminder of her life and spirit. That brick serves as a lasting tribute to her memory and ensures that a part of her story lives on in a place filled with the magic she loved so dearly. For us, it is more than just a name etched in stone—it is a symbol of joy, perseverance, and the love she brought into the world. Every time we think of that brick, we are reminded that Meghan’s spirit continues to shine in one of the most magical places on earth.
To this day, I often find myself wondering what Meghan might be doing if she had lived longer. What career path or passions would she have pursued? Would she have been drawn to teaching, advocacy, or perhaps something creative that allowed her imagination and joy to shine? What friendships and experiences would have shaped her journey? I also picture what she might look like now—she always had long hair that Mom braided or put in pigtails, and I imagine her carrying that same sense of style and grace into adulthood.
Sometimes I envision her standing proudly beside me, lending her voice, energy, and spirit to the work we do. One of the thoughts that comforts me most is imagining her serving alongside me as a leader in the National Federation of the Blind, raising expectations and inspiring others, just as she inspired me during her short life. Though I will never know for sure what her life might have looked like, I take comfort in believing that her legacy lives on through the work I do, and through the countless lives she touched in her own quiet but powerful way.
Thank you for reading my story of Meghan Ashley Mackey—Federationist at heart. Today, on what would have been her 39th birthday, we celebrate her life, her memory, and the inspiration she continues to give us. May her story remind us all to treasure each day, to persevere through challenges, and to raise expectations for ourselves and one another. Meghan’s time with us was short, but her impact is everlasting, and it is my hope that her legacy will continue to inspire future generations to live with courage, joy, and determination.