Anabella’s story: Hope for treating malignant rhabdoid tumors
Watching her deftly maneuver a playground with a huge smile on her face makes it hard to imagine that Anabella Trillo, 3, once faced challenges far greater than a jungle gym. In fact, she has already endured surgery, radiation, chemotherapy, and a stem cell transplant for one of the most aggressive pediatric cancers: a malignant rhabdoid ... Read More about Anabella’s story: Hope for treating malignant rhabdoid tumors
Taking charge: Emma perseveres with laryngeal cleft
Emma Morris is “a pistol,” says her mother, Sarah. “She’s a spitfire, passionate and caring.” But the 11-year-old gets anxious, too — and for an understandable reason. She’s been in and out of the hospital since she was a newborn. In fact, Sarah estimates that her daughter has spent more than 400 nights at Boston ... Read More about Taking charge: Emma perseveres with laryngeal cleft
Jason: My remarkable journey
Most people associate the city of Boston with the Red Sox or the Patriots. I, however, cannot help but associate it with brain surgery. I had my first seizure in the summer of 2006, when I was 14 years old and at camp in Connecticut. Gradually, the seizures increased in intensity and frequency. My parents took me ... Read More about Jason: My remarkable journey
Ava’s journey with arrhythmogenic cardiomyopathy
Claire Poole never thought a 10-year-old could have a heart condition. So when her daughter, Ava, slumped against the wall exhausted and complaining of arm pain one Sunday in 2012, Claire assumed she had overextended herself at a sleepover the previous night. “When we got into the car, Ava turned grey and had trouble breathing,” ... Read More about Ava’s journey with arrhythmogenic cardiomyopathy
Scarlette: Hoping for a bright future with PK deficiency
Two-year-old Scarlette Walker loves pink. For her January visit to the Hematology Clinic at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center, she wore a shocking pink hat and pink dress. “She picked them out herself,” says her mom, Olivia. She even has a pink alter ego. “She pretends she is a pink helicopter named Dizzy. If ... Read More about Scarlette: Hoping for a bright future with PK deficiency
Eva rides out the side effects of aggressive Wilms tumor treatment
Eva Quiroz loves horses. The 10 year old takes riding lessons, and this activity puts a smile on her face. Anyone watching her contentedly guiding a horse around the ring would just assume she has always been a healthy child, says her mom Carla. They would see no hint of what Eva has been through ... Read More about Eva rides out the side effects of aggressive Wilms tumor treatment
Stetson travels from Texas for bladder exstrophy care
As first-time parents, Rachael and Leroy Calk expected to have questions after their son, Stetson, was born. What they didn’t expect was to find themselves faced with a surprising diagnosis when their baby was just a few hours old — and to begin a journey for answers about his care. Although Rachael’s pregnancy had been ... Read More about Stetson travels from Texas for bladder exstrophy care
Henry’s bladder exstrophy journey
Just a few months into his young life, Henry Packer has traveled from the Netherlands to Utah to Massachusetts — and has gone from being a medical mystery to making a best friend with the same rare condition. It’s all part of his ongoing journey with bladder exstrophy, a congenital anomaly in which a baby’s ... Read More about Henry’s bladder exstrophy journey
When surgery shapes your life: Moyamoya patient turned doctor
Elizabeth Kwak is living proof of how far the treatment of moyamoya has come. Twenty-four years ago, Elizabeth had pial synangiosis, a surgical treatment for moyamoya that was pioneered by Boston Children’s Hospital neurosurgeon Dr. R. Michael Scott in 1985. Today, Elizabeth is a fourth-year medical student at Drexel University College of Medicine. She talks ... Read More about When surgery shapes your life: Moyamoya patient turned doctor
Maya is moving ahead after thyroid cancer
For Maya Rao, 15, a playful accident last Thanksgiving led to the discovery of thyroid cancer. As she and her older sister, Deepti, fooled around, happy to be reunited for the holiday, Deepti’s long hair — gathered in a bun — softly hit Maya on her neck. It seemed innocuous enough, but then she developed ... Read More about Maya is moving ahead after thyroid cancer