Faced with a rare type of liver cancer, Ramie focuses on the positive
When Ramie Darling learned that his liver cancer had recurred, he thought for a while and then simply said, “OK.” Asked by his parents if he understood the situation, he replied, “I know I need more treatment. But whenever there’s a ‘down’ in life, I just think of the ‘ups.’” It’s an attitude that has ... Read More about Faced with a rare type of liver cancer, Ramie focuses on the positive
A small act of kindness: Blood donations get Sadie off the sidelines after her aplastic anemia diagnosis
In March of 2024, Sadie’s life was interrupted. A busy high school senior with classes to attend, soccer matches to play, and a much-anticipated trip to France on the horizon, Sadie was very active and felt generally healthy. But when a follow-up appointment at her pediatrician’s office led to an urgent referral to Boston Children’s ... Read More about A small act of kindness: Blood donations get Sadie off the sidelines after her aplastic anemia diagnosis
Then and now: Catching up with some of our short bowel syndrome kids
Also known as “short gut,” short bowel syndrome is a life-threatening condition in which a lack of functioning intestine can make it difficult to absorb the nutrients needed to survive and thrive. Thanks to advances in medical and surgical treatments — many of which have been made by the team in Boston Children’s Center for Advanced ... Read More about Then and now: Catching up with some of our short bowel syndrome kids
A heavy-medaled gymnast and his close call with leg-length discrepancy
Ask 15-year-old Kaleb what he likes about gymnastics and with a sly smile, he’ll say, “flipping around.” That’s Kaleb: understated, funny. But watch him in action, and you’ll see a focused gymnast who earned two medals in the 2024 Men’s Eastern National Championships. He probably won’t mention that two years ago, a surgeon told his ... Read More about A heavy-medaled gymnast and his close call with leg-length discrepancy
For Fiadh: Pushing the envelope to treat drug-resistant epilepsy
Fiadh is a bubbly and empathetic 4-year-old. And if you ask her parents, Elaine and Dario, she’s also mischievous and wild. “She knows when she shouldn’t be doing something,” Elaine says. “Then she gives you a look, giggles, and does it anyway.” Fiadh’s tenacity likely comes from her mother, which is a good thing. After ... Read More about For Fiadh: Pushing the envelope to treat drug-resistant epilepsy
Clara now runs, dances, and sings along to Taylor Swift thanks to a new life-changing heart surgery
The time had finally come. Only two weeks after a transformative heart operation at Boston Children’s, 11-year-old Clara Portnoy stood in a sprinter’s starting position on an open stretch of grass during her school’s field day. Surrounded by classmates and teachers, she was ready to go. Born with a condition in which the structures on ... Read More about Clara now runs, dances, and sings along to Taylor Swift thanks to a new life-changing heart surgery
Griffin’s return to the slopes and sea after kneecap dislocation
Whether cruising down a snowy trail or catching a wave, 18-year-old Griffin Srokose loves the adrenaline and freedom he feels when snowboarding and surfing. He used to enjoy lacrosse as well, but after dislocating his left kneecap during a game at the age of 14, his kneecap continued to pop out of place. By the ... Read More about Griffin’s return to the slopes and sea after kneecap dislocation
Kiersten finds new purpose after care for life-threatening cardiomyopathy
Being just three miles away from her cardiac care team at Boston Children’s makes all the difference in the world to New Jersey native Kiersten Rock-Torcivia as she starts her sophomore year at Boston College. She is now closer to the specialists who help her manage a rare and life-threatening cardiomyopathy. Kiersten initially believed she ... Read More about Kiersten finds new purpose after care for life-threatening cardiomyopathy
Cerebral adrenoleukodystrophy: How the Cooksons dodged a devastating disease
Heather Cookson believes that if she hadn’t insisted her son Ricky get a brain MRI to investigate his frequent headaches, neither he nor his younger brother Jerry would be walking or living full lives today. “I just wanted peace of mind,” she says. “Ricky got the MRI, and that’s when the lesion was found.” The ... Read More about Cerebral adrenoleukodystrophy: How the Cooksons dodged a devastating disease
Catching up with Lucas eight years after his multivisceral transplant
Lucas and his mom, Heather, aren’t shy talking about his health journey and his multivisceral transplant. “If other families can learn something from Lucas’ story, it would be to keep advocating for your child and to trust that gut feeling,” Heather says. “Without organ donors, Lucas would not be here today.” Lucas was born with ... Read More about Catching up with Lucas eight years after his multivisceral transplant