Patient Stories
Life with Li-Fraumeni syndrome
On the first day of school, 16-year-old Darcey Boucher carefully laid out what she was wearing: black jeans, a white T-shirt, black sweatshirt, white Vans — and her wig. Darcey has osteosarcoma, a rare form of bone cancer. She had surgery in May to remove the tumor from her leg. And now, she is on ... Read More about Life with Li-Fraumeni syndrome
Patient Stories
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
Patient Stories
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
Patient Stories
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
Research
Two neuroscience rock stars elected to the National Academy of Medicine
Beth Stevens, PhD, and Elizabeth Engle, MD, are the latest Boston Children’s Hospital researchers to be elected to the prestigious National Academy of Medicine. Their election, together with Daphne Haas-Kogan, MD, brings Boston Children’s total number of current NAM members to 22. Both scientists hail from the F.M. Kirby Neurobiology Center at Boston Children’s and are ... Read More about Two neuroscience rock stars elected to the National Academy of Medicine
Clinical Care
Most parents of children with advanced cancer don’t recognize their low chance of cure
End-of-life care for children with advanced cancer is often very intensive, and can cause much suffering. When parents recognize that a cure is unlikely, they often choose to spare their children from aggressive treatments and focus on the quality of their child’s remaining time. But a study published Oct. 4 in the journal Cancer finds ... Read More about Most parents of children with advanced cancer don’t recognize their low chance of cure
Patient Stories
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
Health and Parenting
Get answers about your child’s chronic pain
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Patient Stories
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
Patient Stories
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