Everli: Living her best life after atlantoaxial instability
When they travelled to the orphanage in China in early 2018, Shannon and Matt Gottschalk knew the toddler they hoped to adopt had Down syndrome. They knew she had been abandoned by the side of a highway and delivered to an orphanage by the farmer who’d found her. The couple was surprised, however, that at ... Read More about Everli: Living her best life after atlantoaxial instability
Camp Journey and a horse named Evan build Luca’s confidence
Until this summer, 8-year-old Luca Castellano had never been on a horse. But after participating in Camp Journey, a therapeutic riding camp for kids with congenital heart conditions, he was riding and caring for a horse like a pro. “Luca pretty much fell in love with a horse named Evan,” says his mom, Rebecca. Camp ... Read More about Camp Journey and a horse named Evan build Luca’s confidence
Violet is blossoming five years after Tessier cleft surgery
In October 2014, Violet and her parents traveled from their home in rural Oregon to Boston Children’s Hospital for a life-changing surgery. Violet, who was born with an extremely rare and serious craniofacial anomaly, called a Tessier cleft, needed an operation to close the gap in her facial bones. After nine hours in the surgical ... Read More about Violet is blossoming five years after Tessier cleft surgery
Kaitlyn begins road to recovery after foot amputation
At just 14 years old, Kaitlyn Vu was asked to accept a drastic, life-altering surgery. In early 2019, she was diagnosed with osteosarcoma — a rare type of bone cancer that ultimately led to the amputation of her left foot. Kaitlyn’s ability to meet each challenge of her diagnosis with a combination of grace and perseverance has ... Read More about Kaitlyn begins road to recovery after foot amputation
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