The magical power of organ donation


He loved magic. He loved physics, technology and the solar system too, but it was magic that made his dorky side seem cool. While his friends attempted to act suave with the ladies, 31-year-old Kevin Sullivan didn’t have to try. He had his own charm—magic tricks. He dazzled his nieces and nephews and his large circle of friends, his sister Katie Sullivan says. Magic was part of his magnetic personality.

One evening, while out with a friend, Kevin began performing magic tricks using picture IDs. He noticed a heart on his friend’s driver’s license and asked what it meant. What followed was a 30-minute conversation about organ donation, which ended with Kevin announcing, “Well of course I’d be an organ donor. I’m awesome! My organs are awesome!”

That was last summer.

A few months later, Kevin lay in a bed in the Intensive Care Unit at Massachusetts General Hospital. He had suffered severe brain damage following an accident at work. It was clear he would not recover.

Kevin with sisters Kerrie, left, and Katie

“It is difficult to process an emergency of the worst kind,” says Kevin’s mother Debra Sullivan. “He was healthy, handsome and vibrant. He had a bright future. We called him ‘our Kevin from heaven.’”

Debra looked at her son, who’d worked so hard to keep his body healthy, and thought of her kindergarten teaching assistant—how she’d endured three kidney transplants, how appreciative she is of her life, how every day she celebrates and honors the gifts she’s been given. Then, Debra looked at her family.

“Do you think Kevin would want to be an organ donor?”

Later, after an initial meeting with the New England Organ Donor Bank, the family learned about the magical story that led to Kevin’s emphatic proclamation “My organs are awesome!” They had their answer.

“Kevin worked his magic for us in a whole different realm,” says Katie.

Adds Debra, “It was the easiest hard decision we have ever made.”

Kevin’s organs saved the lives of three people—two men in their 50s and a 22-month-old boy.

Donating Kevin’s organs was the “the easiest hard decision we have ever made,” says Kevin’s mom Debra.

Watch Debra and Katie tell about the family’s decision.

Julian’s story
When Julian Molina-Cordero turned two, his mom Liz Molina-Cordero dressed him up as comic book character Captain America. Family and close friends joined in the Avengers-themed birthday celebration—kids running around, laughter, games, cake and ice cream. It was a typical 2-year-old’s birthday.

For Julian, however, it was extraordinary.

Julian, 2 years old, and 2 days old

Julian was born with a condition called posterior urethral valves (PUV), a blockage in the urethra caused by extra tissue growth that prevents the normal flow of urine and damages organs. Liz was told the prognosis was not good.

“I tried to enjoy every day,” she says. “I tried not to think about what tomorrow would bring, to worry less, but I had my days where I was just like—wow.”

Julian spent the first three months of his life at Boston Children’s Hospital, where he was diagnosed with end-stage renal disease. At 40 days old, he had an endoscopic ablation to remove the blockage in his urethra, at eight months a gastrostomy tube was inserted into his stomach to deliver nutrition, and at 10 months he had a dialysis catheter placed in his abdomen.

Captain America and his magic kidney
In the Marvel comic books and in the movies, Captain America is the alter ego of a frail man who becomes the pinnacle of human perfection with the help of a magic serum. He wears a costume armed with a virtually impenetrable shield to fight off his foes.

After 11 months on dialysis, Julian received his magic serum when he received Kevin’s kidney.

Nearly every day, Liz documents his progress on a Facebook page, A Miracle for Julian. She has done so since he was a just an image on an ultrasound screen: post transplant day 10, first smile; post transplant day 122, first time playing in the snow; and post transplant day 133, the first time Julian met Kevin Sullivan’s family.

For months now we have been communicating through letters and emails with Kevin’s family, who is Julian’s donor. Yesterday we had the pleasure of meeting them. They made us feel comfortable as if we knew each other for years.

“Kevin saved my son’s life,” says Liz. “It changed all our lives. Now Kevin lives on in Julian.”

Clockwise from left, Debra, Katie, Liz and Julian
Clockwise from left, Debra, Katie, Liz and Julian

Every day Liz sees how much Julian is improving and how much trouble he gets into now. Several weeks after transplant, he began walking—another first to add to the list.

“I am so proud my brother was a part of something so beautiful,” says Katie Sullivan. “Knowing that Kevin lives on through his organ recipients is extremely comforting to us—he had awesome organs.”

Learn more about Boston Children’s Pediatric Transplant Center.

Read Full Story | Leave a Comment

Norman Spack: Saving transgender lives

SpackNorman_06In traditional Navaho culture, individuals with the physical or behavioral features of both genders are considered “two-spirited” and often arbitrate in marriage disputes because they’re trusted to see both sides of the story. In the broader American culture, though, identifying with a gender different from the one assigned at birth—what we call transgender—is not fully understood or accepted.

That’s changing—slowly. Recent cultural developments—including the rise of transgender characters in TV shows such as “Orange is the New Black” and “Transparent” and the high-profile transitions of celebrities like Bruce Jenner, who is being interviewed by Diane Sawyer on ABC’s 20/20—have brought about a heightened interest and awareness of the transgender population and their journey towards acceptance.

That journey can be especially challenging for transgender teens and young adults, a population with a startlingly high rate of suicide attempts and mental health struggles. We sat down to learn more about transgender youth and adults from one of the leaders in the field, endocrinologist Norman P. Spack, MD, co-director (with Urologist-in-Chief David A. Diamond, MD) of the Gender Management Service (GeMS) program at Boston Children’s Hospital—the first of its kind in the nation.

Read Full Story | Leave a Comment

Guatemalan teen with congenital heart defect inspired to study medicine

Juan PabloAs a child growing up in Guatemala, Juan Pablo was told by his parents that he was born with a little hole in his heart that was patched up. “It wasn’t until I was a teenager that I figured out that what I had was not that simple.“

Juan Pablo was born in 1995 with Tetralogy of Fallot (ToF), a condition involving four different congenital heart defects. With no pediatric cardiac surgeons in Guatemala at the time, Juan Pablo’s parents took their newborn son to Switzerland for treatment, which included open heart surgery to remove his pulmonary valve. He went on to lead a normal, healthy childhood.

As he matured, Juan Pablo began to ask questions about his condition and his past. He found out that his surgery in Switzerland was performed by Aldo Castañeda, MD, a native of Guatemala who had retired in 1992 as Chief Cardiac Surgeon at Boston Children’s Hospital. Juan Pablo also discovered that Castañeda was back in Guatemala running the country’s first pediatric cardiac care program at Unidad de Cirugia Cardiovascular Pediatrica de Guatemala (UNICARP).

Read Full Story | Leave a Comment

Climbing mountains: “I won’t let ulcerative colitis define me”


Mark Donohue craves outdoor activity. While most were braving Old Man Winter’s 2015 wrath, this 19-year-old Ticonderoga, New York native embraced Mother Nature and hiked to the summit of his home state’s Black Mountain, tackled the slopes in Colorado and pond-skated locally with friends.

Mark says his love of the great outdoors and his quest to climb new personal heights has never been overshadowed by ulcerative colitis.

“I won’t let the disease define me,” says Donohue, a college freshman at Binghamton University in New York. “I take it in stride, stay positive and don’t let ulcerative colitis dictate the kind of person I want to be.”

Read Full Story | Leave a Comment