A benefit for cystic fibrosis and organ donor awareness will be held in honor of Gianna Altano at Moe's Alley on Sunday, Dec. 8, featuring performances by Tess Dunn and Urban Theory.
The ominous grey clouds forming over the Pacific on the morning of Saturday, March 30, of this year—just beyond the coastal bluffs of the Seascape Beach Resort in Aptos—forced the gathering scheduled there that afternoon inside. It was an ephemeral disappointment, for the impending rains could not—and did not—dampen the spirits of those who were assembling to celebrate the life of Gianna Rose Altano, who had died two weeks earlier from the wretched genetic disease known as cystic fibrosis. She was one day beyond her 23rd birthday.
For all the impending darkness, it was a glorious afternoon. Those who loved, cherished and admired Gianna—and they were legion—crowded first into the resort’s large banquet hall, and then into various overflow rooms required for the several hundred friends and family members who arrived to share the beauty and love of this amazing young woman.
The word “moving” only hints at what was in store for those of us blessed to be in attendance that afternoon. It was a truly transcendent event—one that I shall never forget, with images and feelings that are indelibly forged into my soul.
If ever there were something about which I wanted to write truly, with a clear and crystalline honesty, it’s about this day, and about what it meant to those of us who assembled to celebrate—and that is the precise word I want to use—Gianna’s life and her indelible spirit.
Words will never adequately describe her presence on this earth. In the arc of her short lifespan, she was a profoundly loving daughter, sister, granddaughter, friend and cousin. She did many of the things that kids growing up in the region do, but she did so with a purpose and appreciation rare in a child of her age. She rode horses and vaulted, played on a soccer team called the Flaming Snowballs, participated in Junior Life Guards and gymnastics, earned a brown belt in a martial arts program.
As a teenager, she swam on the Soquel High swim team, took up surfing and developed an absolute passion for all things related to the ocean. So much so that at the age of 20—only three short years ago—she moved to Hawaii, where she reveled in the powerful swells that pounded the North Shore of Oahu, and found a certain inner peace in their force and grandeur. She engaged her maritime surroundings with infinite zeal on a daily basis, swimming with dolphins, turtles, fish and once, even, with sharks.
She loved music, played the piano, took up the ukulele and wrote constantly—poems and stories and small snippets that seemed always to capture the magic around her. In a special, hand-crafted Christmas card she made for a young man dealing, like her, with the challenges posed by cystic fibrosis (CF), she wrote: “Sometimes I think that people with CF are lucky because we get the opportunity to learn how to love more deeply than most people.”
Following her nine-month sojourn in Hawaii, she returned home and found her calling in American Sign Language, and was working towards getting her credential to become an interpreter at the time of her death.
Perhaps most importantly, Gianna was also a warrior in raising cystic fibrosis awareness. For many years her family has hosted a massive fund-raising gala in her honor at the Seacliff Inn. A deeply committed network of friends joins their efforts to put on the Friends Cure CF Dinner and Auction, which benefits both Cystic Fibrosis Research, Inc. and The Living Breath Foundation. The event—which started as a hot dog stand at the World’s Shortest Fourth of July Parade in Aptos—has raised nearly a quarter-million dollars since its inception.
***
Gianna’s family had asked us to wear “happy clothes” to her services—Gianna loved the vibrant hues of the tropics—and so amidst the grey backdrop that afternoon of the memorial there was a sea of vivid colors, with attendees of all ages wearing island shirts and dresses, leis and beads. For all the darkness and gloom—it could not be entirely escaped—there was an underlying joy always present, a triumph of the spirit.
Pictures of Gianna were everywhere, visual memories of a life lived with love and passion. But the one that struck me most was one that I had not seen before: Gianna on a beach in Hawaii, her back arched, her face to the sky, her arms reaching up to the heavens. The image was poster-sized, near the front podium. I stared at it throughout the afternoon. She seemed so present in the photograph, so full of gratitude for every moment of her life.
Gianna was someone who cherished what we often refer to as the “little things,” those moments that we may take for granted, but upon reflection are what shape, define and give deeper meaning to our lives. She loved “point drives,” as she called them, cruising along Pleasure Point, taking life’s small detours that we often rush by in the bustle of 21st-century life.
Gianna loved baking and home crafts, which she often undertook with her sister Marissa, and in the final months of her life she had made a “good things jar,” which would hold written notes describing each good thing that happened to her throughout the year, to be read on New Year’s Eve.
I recalled running into her several years ago, when she was a teenager, walking along the beach in Rio Del Mar. I had been through my own health battles by then and was sensitized to the issue of mortality. To me, Gianna seemed almost other-worldly in her movements, as though she lived in a state of higher consciousness than I could ever imagine. I watched how she stared at the ocean, moving slowly to its rhythms, dancing back and forth with the waves. She seemed to be in touch with the music of the universe. An earth angel, I thought—a lovely, perfect earth angel.
***
Live in Santa Cruz for nearly six decades, and you’ll realize how small the town can seem. So it was at Gianna’s memorial service. I saw friends and loved ones from different passages of my life dating back to childhood. I made sure to surround myself with love: on one side, I sat next to my lifelong friend Michelle Poen, who had worked for years with Gianna’s mother, Sydney, and Michelle’s companion Hope Teasdale. On my other side I had my wife Siri, who had stayed close to Gianna and the Altanos for the final difficult days, and my daughter, Tess, who also has cystic fibrosis.
I was duly fortified.
It was a tough day. We laughed, we cried, then we wept some more. There is no escaping that reality of loss, no sugar-coating it. All of the speakers that afternoon were powerful and moving. Everyone who spoke—nurses, caregivers, doctors, friends, family—did so from a place of grace, directly from the heart. It was a symphony of love.
My daughter Tess sang a song, entitled “Breathe,” written by Matt Scales, who died from cystic fibrosis several years ago at the age of 27. She sang it with an emotional intensity that pierced me to the darkest depths. I succumbed to a steady weeping, shoulders hunched. I didn’t try to hold anything back anymore.
Near the end of the services—as Gianna’s mother Sydney, her father Danny and sister Marissa made their way to the podium to address the overflowing crowd—I noticed that the clouds had parted on the horizon and that wide, bright swaths of sunshine were now bouncing off the waters. Danny stepped to the microphone, possessed of a fortitude that was truly commanding, and began reading a poem that he had written in Gianna’s honor:
In shock, strange as it seems.
I spent 23 years watching CF
ever so slowly take my daughter’s life.
Never her spirit.
Never her love.
Never her gratitude.
Never her lust for life.
Never her kindness.
Never her beauty.
Never the light in her eyes.
Never her concern for others.
Never her creativity.
Never ever her smile.
***
It goes without saying that Gianna’s death struck close to the marrow. I have known Gianna’s father Danny (I call him Dante, in honor of our shared Italian heritage) for nearly 30 years, and when my own daughter was first diagnosed at the age of five months (Gianna was four years old at the time), he was the first person I thought about. I would often watch him through the years in full admiration of his humor and strength in the face of such a horrific challenge. I did so again the day of the memorial.
For the uninitiated, cystic fibrosis—often referred to by young children as “sixty-five roses”—is a genetic illness, usually associated with incurable, advancing lung disease. More than 30,000 people in the United States have been diagnosed with CF, and perhaps most remarkably, more than 10 million Americans are silent carriers of the CF gene.
It was only in the 1930s that researchers first identified the illness. Prior to that, most children with the more-deadly mutations of the illness didn’t live beyond the age of two. In certain respects, it is an invisible disease. Those who saw Gianna at play in the fields and seas of the universe would never have realized that she was so afflicted.
Because the lungs of someone with cystic fibrosis serve as an ideal host for a variety of infections, those with CF spend hours each day doing respiratory therapy to help clear their airways. They take scores of pills and other medications. But the cycle of inflammation and infection inevitably leads to permanent and irreparable lung damage. As my wife has noted, it feels as though “there is always a wolf outside the door.” Today, while advances in CF research have extended the median life expectancy for those with CF to 37, it remains a capricious and pernicious disease, all too often claiming the lives of children and young adults.
Most of those attending Gianna’s service were familiar with CF and the varied challenges it imposed on her life. They had lived through it all with her. For those in her immediate family—her mother, father and sister—those impositions had been woven into their daily lives in such a way that had become familiar and routine. But her departure had not. The vacuum was immense, unfathomable.
***
It had come so suddenly. Little more than five months earlier, in November of 2012, Gianna was still healthy enough to be riding a bike on Thanksgiving weekend. The following month, however, her health made a severe—and as it turned out—irreversible turn for the worse. Her father likened it to a runaway “freight train out of control.” The “best medical care in the world,” he noted, “could not stop it or even slow it down.”
Gianna experienced a pneumothorax—a terrifying situation in which a hole developed in her lung—causing air to escape and fill her chest cavity, and requiring a pump to alleviate the pressure while the perforation healed. A month later, it happened again. It became clear that a lung transplant would now be her only option for survival. Over the next several weeks, she was in and out of the hospital. In early February, the blood vessels in her airways became so inflamed that they ruptured, filling her lungs with blood.
She was moved to the top of the lung transplant list at Stanford. The waiting became an excruciating ordeal for her family and loved ones, in which every day was met with both hope and despair.
By early March, Gianna was no longer able to breathe on her own. The wait for lungs dragged on, while Gianna’s health became a moving target. Her struggle became an hourly race with time. The word spread, and Gianna’s friends and family members flocked to the hospital to support one another, and share their love.
Nurses and doctors commented that they had never seen such a drought of organs available for transplant. Bad news begat bad news. As each day passed, hope for a successful transplant diminished, as Gianna became too weak to survive the surgery. On the eve of Gianna's 23rd birthday, her family still had hope that lungs would suddenly appear, but as her birthday arrived, so too did the team of doctors who shared the heartbreaking news that Gianna could no longer survive a transplant.
According to the U.S. Department of Health and Human Services, individuals in need of a donor are added to the transplant list in this country every 10 minutes. Each day, while an average of 79 people receive a transplant, 18 people die waiting, due to a shortage of organs. Donate Life America (whose vision is “a nation that embraces organ, eye and tissue donation as a fundamental human responsibility”) notes that there are nearly 120,000 individuals in this country—from infants to grandparents—waiting for organ transplants.
Contrary to conventional wisdom, it is extraordinarily easy to become an organ donor. Most people are able to register when they are renewing their driver’s licenses, and every state has an online registry. It’s that simple. Most importantly, people can express their wish to be a donor to their families, friends and physicians and include their wishes in an advance directive or will.
Statistics have a way of dehumanizing the story. The numbers depersonalize what really happens at critical moments in someone’s life. They give no weight to the emotional rollercoaster ridden by loved ones when hope turns into mourning, when possibility becomes a dead-end street. Gianna Rose Altano died waiting. She died waiting in Stanford Hospital for the lungs that never came.
There was no donor.
***
This could be where Gianna’s story ends—but it is not.
In a supreme act of selflessness and generosity, Gianna’s family honored her personal commitment to organ donation. Shortly after she died, one of her kidneys was successfully transplanted, along with her corneas, heart valves, vertebrae and various tissues. Several of her organs were donated for research, including her ravaged lungs, which were sent to the Cystic Fibrosis Research Laboratory at Stanford. Even her beautiful hair was donated to children through Locks of Love.
Gianna was everywhere.
During a time of unspeakable grief, the Altanos honored their daughter by giving the gift of life to others—the very gift that had been denied their daughter. “Organ donation was the right—and only—thing to do,” said her mother Sydney. “Gianna would love knowing that she saved someone else with her kidneys, or that she helped someone to see with her corneas. It has been quite an experience being on both sides of transplant—waiting in vain as a recipient, and then as a donor family. I hope Gianna will inspire people to do the right thing and sign up as donors.
“It’s amazing how many people were helped by Gianna,” her mother concluded. “And that matters. For people in this situation, going through such a loss, it’s kind of all you've got.”
At Gianna’s memorial service, I saw a young man who could have been me 30 years ago—long hair, passionate, fit, full of life, a young father. I watched him looking out one of the windows across the Pacific into the horizon, crying, overwhelmed by sadness and loss.
I introduced myself. He was Gianna’s cousin, Paul Karo. He talked about his love for Gianna, about growing up with her, of the great loss and vacuum he was experiencing. The overwhelming pain. I told him that in my own health battles I had experienced a sense of the eternal. We looked each other in the eyes, hugged, and moved on.
In Gianna’s case, that sense of eternity is both figurative and literal.
I looked around the banquet hall. People were now up, moving, greeting each other, hugging, crying some more, laughing, smiling, recovering. It was a room full of raw emotions.
Outside, the sun was now shining in full force. I walked down to the ocean. I imagined Gianna there, dancing with the waves. Earlier I had folded the memorial handout and placed it in my pocket. I mindlessly rubbed the paper between my fingers, and then pulled it out.
On it was the iconic image of Gianna, her arms outstretched toward the heavens, and a poem she had written, entitled “Paradise.” It was almost as if she were speaking to me:
Hear the waves crashing in
See the beauty that surrounds you
Look where we live
Enjoy every moment
And try to understand
what a miracle this all is.
I read it over a few times. That she herself was the miracle probably never occurred to her. She was too giving, too humble, to ever think that. What a miracle, indeed.
A Benefit for Cystic Fibrosis and Organ Donor Awareness
On Sunday, Dec. 8, at 7pm, Moe’s Alley will host a special all-ages benefit featuring performances from Tess Dunn and Urban Theory. Tickets are $15/$20 adults; $10 for children/students. For more information about organ donation, go to http://donatelife.net/. For more information about Friends Cure CF, go to http://friendscurecf.com/
