Simon’s incredible progress after neonatal stroke
Simon Lieffers is “a very busy boy,” says his mother, Cara. At 2 1/2 years old, he’s obsessed with trucks and tools like many kids his age — but he’s also fascinated by things most grownups don’t consider fun. “He wants to mow the lawn and vacuum the house with us,” laughs Cara. “He really ... Read More about Simon’s incredible progress after neonatal stroke
Teen author dedicates a children’s book to her twin brother with Shwachman-Diamond syndrome
Sophia Namazy, 14, has a hero: it’s her twin brother Max, who has Shwachman-Diamond syndrome. This is a rare and very serious genetic condition that impacts multiple systems in the body, including the bone marrow, pancreas, skeleton, and immune system. Although her brother is currently doing well, people with this disease have a high risk ... Read More about Teen author dedicates a children’s book to her twin brother with Shwachman-Diamond syndrome
While enjoying college, Ewing sarcoma survivor looks to her past
It lacks sunsets and skylines, but Maddie Carlson loves the view from her dorm room at Emmanuel College in Boston. If the 20-year-old junior sticks her head out the window at just the right angle, she can almost make out a portion of the place she credits for saving her life after she was diagnosed ... Read More about While enjoying college, Ewing sarcoma survivor looks to her past
Interventional pain techniques bring Sadie relief
It’s hard for Sadie Doherty and her parents to remember a time when she hasn’t been in pain. Now 17, she had gastrointestinal problems “right off the bat,” says her father, Mike. Testing at Boston Children’s Hospital eventually revealed the presence of eosinophils — white blood cells that can indicate an allergic reaction — in ... Read More about Interventional pain techniques bring Sadie relief
Sofie’s story: A new gene therapy treatment for SMA
Sofie Petrovická sits up in the exam room, smiling and laughing with her physical therapist, Elizabeth Maczek. Though she’s just over a year old, sitting on her own is no minor feat for Sofie — in fact, it’s nothing short of a miracle. Sofie was just 3 months old when she was diagnosed with spinal ... Read More about Sofie’s story: A new gene therapy treatment for SMA
How families are reshaping Shwachman-Diamond syndrome research
No one knew the heartache about to unfold when Savannah and Brett Lillywhite first began thinking about having a family 10 years ago. The Lillywhites Savannah and Brett are both the unlikely carriers of a rare condition called Shwachman-Diamond syndrome — SDS for short — a blood disorder that can lead to bone marrow failure ... Read More about How families are reshaping Shwachman-Diamond syndrome research
Teen cancer survivor rediscovers her confidence with prosthesis
At just 18 years old, Gabbi Stewart is a two-time survivor of two very different types of cancer. While her care team acted quickly to aggressively treat her most recent cancer, Stewart was faced with what she says was her greatest challenge: building back the self-confidence that the disease had eroded. A rare diagnosis In ... Read More about Teen cancer survivor rediscovers her confidence with prosthesis
Ellery’s story: The mystery of opsoclonus myoclonus syndrome
Ellery was a normally developing 2-year-old when her skills took a dramatic shift backwards last winter. “She started wobbling when she walked, like someone who had had a few beers,” says her mom, Maura. “Then she developed tremors in her hands, couldn’t put a spoon to her mouth and she stopped playing with any of ... Read More about Ellery’s story: The mystery of opsoclonus myoclonus syndrome
Samantha’s story: ‘I was bullied by a classmate’
During the fifth grade when Samantha was 10 years old, she was bullied by a male classmate. She remembers walking through the halls of her elementary school and hearing the bully call out these words: “Why are you on this earth? You don’t deserve to be alive.” The bullying followed her every day. “I didn’t want to ... Read More about Samantha’s story: ‘I was bullied by a classmate’
How a broken leg and a transatlantic flight led to a deep vein thrombosis
Pain was 16-year-old Katerina Dalmanieras’s first warning sign when she returned from a family vacation in August. The high school junior, who fractured her fibula a month earlier, was in a leg brace and on crutches, so she had not moved during the seven-hour transatlantic flight. “When I got home from the airport, my leg ... Read More about How a broken leg and a transatlantic flight led to a deep vein thrombosis