Stories about: cystic fibrosis

‘What a difference a year makes’: Catching up with liver brothers Brent and Malambo

Liver Transplant recipients - Brent and Malambo
Brent and Malambo

We are honored U.S. News & World Report has named Boston Children’s Hospital the #1 pediatric hospital in the U.S. As we celebrate this honor, we’re reflecting on some of the greatest children’s stories ever told — stories of the patients and families whose lives touch ours and inspire us.

Two of those patients are “liver brothers” Malambo Mazoka-Tyler and Brent Groder.

Malambo and Brent are, by all standards, oceans apart.

Zambian-born Malambo is nearly two. His world, one year after a life-saving, split-liver transplant, is all about walking and talking, laughing and dancing and figuring out why the sky is blue and why cows moo — a typical toddler.

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Liver brothers: Two lives linked by split-liver transplant

Brent and Malambo - Liver transplant recipientsIt is late in the evening on June 14, 2015. Kern Tyler and his wife Pasina Mazoka-Tyler sit in a waiting room at Boston Children’s Hospital, while their 11-month-old son Malambo Mazoka-Tyler, born with a life-threatening disease called biliary atresia, undergoes a liver transplant.

To arrive at this moment, they have traveled vast distances, visited multiple hospitals, sought the advice and counsel of numerous doctors, packed all their belongings and moved more than 7000 miles from their home in Zambia, Africa, to Boston, Massachusetts.

He had picked out what he wanted to wear, where he wanted to be buried, and he told me, ‘My soul is all I have left. If I don’t have a liver, I am going to die.’

Yet, they call this journey a blessing.

In the same room, a family from Maine patiently waits, while their son is prepped for his liver transplant.

Born with cystic fibrosis, 18-year-old Brent Groder is battling end-stage liver disease. Just two months earlier, he was planning his funeral, recalls his mom Charlene Newhall. “He had picked out what he wanted to wear, where he wanted to be buried, and he told me, ‘My soul is all I have left. If I don’t have a liver, I am going to die.’”

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Bobby Donovan’s double lung transplant journey

Twenty-two-year-old Bobby Donovan was diagnosed with Cystic Fibrosis (CF) at 4 months old. He was relatively healthy for someone with CF. However, in November of 2008 his health began to deteriorate. Every three months or so, he was admitted to Boston Children’s Hospital for two to four weeks at a time. In April of 2014, with his lungs not expected to last the year, Bobby received the double lung transplant, which not only saved, but transformed his life. One year following surgery, he shares his remarkable story.

Learn more about the Boston Children’s Lung Transplant Program.

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The Power of Two in You: Staying Healthy, Living with CF and Lung Transplant

Sunday, June 17, at 1 p.m. The Adult Cystic Fibrosis (CF) Program at Boston Children’s Hospital and Brigham and Women’s Hospital invites you for an afternoon of entertainment, education and discussion about life with CF and lung transplant. The event will feature a special screening of “The Power of Two,” a documentary offering an intimate look into the lives of twin sisters living with CF after double lung transplants. Their connection to the CF and transplant communities provides rare insight into the struggle—and triumph—of living with chronic illness.

The event is hosted by Ahmet Uluer, DO, director of the Adult CF Program, and his patient Beth Peters. The following blog offers a glimpse into Beth’s life and explains why events like this Sunday’s gathering are so important to the CF community. 

This year, for the first time ever, more adults than children will be living with cystic fibrosis (CF), a chronic, inherited disease that affects a person’s lungs and digestive system. Just 50 years ago, most patients with CF didn’t live past elementary school. But thanks to modern medicine a majority of CF patients now live into adulthood, often into their 30s, 40s and beyond.

And while that’s great news, for patients with CF like Beth Peters, life is a little more complicated.

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