Libby’s story: Finding a surgical path to seizure control
Seven years ago, while my husband was visiting his parents in Washington, D.C., I traveled with our 3-year-old daughter, Libby, to Boston Children’s Hospital via ambulance from New Hampshire. Libby had been sick with a bad cold and had been acting unusually, with short episodes of rapid eye movement and stuttered speech. An epilepsy diagnosis ... Read More about Libby’s story: Finding a surgical path to seizure control
Amelia makes a special connection with her EEG tech
Amelia arrived at Boston Children’s Hospital in August with a present in her small hands. The gift was for one of Amelia’s favorite people at the hospital, electroencephalographic (EEG) technician Katie Tucker. Tucker has been Amelia’s primary EEG tech since she was just 7 months old. “We first traveled up to Boston Children’s from New ... Read More about Amelia makes a special connection with her EEG tech
Finding the best care for Zeeva
When our 8-year-old daughter, Zeeva, giggles and runs in her walker to the swing set, it’s like watching pure childhood joy. Understanding what it has taken to get her to this point, though, is close to unimaginable. Zeeva is one of fewer than 150 people in the world with a rare disease called Gould Syndrome ... Read More about Finding the best care for Zeeva
My life as a seizure alert dog
I’m Alo, a seizure alert dog. The story of how I got my name is pretty funny. Liyana, my best human friend, has epilepsy. One day, she was telling her nurses at Boston Children’s Hospital that she was getting a service dog. She had to pick a name and had chosen Alice. But she wasn’t ... Read More about My life as a seizure alert dog
After beating the odds, Joey dreams of Hollywood
Joey Manzo’s biggest dream is to travel to Hollywood to meet Ellen DeGeneres. Given how many dreams he’s already made a reality, it’s likely one day he’ll make that happen too. DiGeorge syndromeDiGeorge syndrome, also called 22q11.2 deletion syndrome, is a genetic condition caused by missing a part of chromosome 22. It can cause a ... Read More about After beating the odds, Joey dreams of Hollywood
Mermaid Caitlyn and her mer-doctor face interstitial lung disease
Our daughter Caitlyn’s first year-and-a-half of life was a puzzle. She was getting sicker and sicker and no one near our home in New York could figure her out. After a period of unexplained rashes and weight loss, our pediatrician’s office said to us, “Something’s wrong and we don’t know what it is. Put her ... Read More about Mermaid Caitlyn and her mer-doctor face interstitial lung disease
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
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