Archive for international
Pinpointing Karlijn’s seizures: Neurosurgery helps teen get back to her life
Karlijn Kuiper was visiting her home country of the Netherlands a few years ago when the trouble began. At first, her family noticed she would zone out. “She had these strange spells where she would just stare,” remembers her mother, Marieke. At first, it didn’t occur to Karlijn’s family that they could be seizures. Like ... Read More
A rebirth in Boston: Gene therapy turns 10
Lea la versión en español. Dec. 17 marks a decade since Agustín Cáceres was “renacido” — reborn. That’s how his parents, Alberto and Marcela, describe the day their son received his new gene. Born in 2010 with X-linked severe combined immunodeficiency (SCID-X1), Agustín spent the first few months of his life in isolation, at home ... Read More
Accessing hemophilia care: A tale of two countries
When Miguel and Marco Antonio were born in the Philippines, they had a 50 percent chance of having hemophilia, as two of their uncles had the condition. “We were just crossing our fingers that they’d fall in the other 50 percent,” says Jojo, their father. But when Miguel was taking his first steps as ... Read More
A mother’s quest to find a cure for Shwachman-Diamond syndrome
Poppy Inez Hawkins is a born entertainer. Her favorite song is “Fire” by Kasabian. She loves kitchen disco. And she can frequently be found staging performances in the Hawkins-family living room at their home in London, England — free tickets provided and clapping encouraged. “She talks to everyone and will tell anyone who wants to ... Read More
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
Stem cell transplant leads Ali to remission, and a new home
The journey that led Ali Mercy to Dana-Farber/Boston Children’s began in 2010, when Ali was diagnosed with acute lymphocytic leukemia (ALL). At that time, he was treated in the United Arab Emirates (UAE), where his family lived. Chemotherapy initially put Ali’s ALL into remission, but three years later, it returned — this time having metastasized to ... Read More
Saif looks ahead to life after spine surgery
Saif and his mother, Khawha Abbas, both had questions for Dr. Daniel Hedequist. For the past nine months, the family had lived in Boston while Saif underwent treatment for a severe spinal deformity. They were scheduled return to the United Arab Emirates (UAE) that evening, but first, Saif wanted to know if he would be ... Read More
From Cape Verde for coordinated CDH care
Most parents have never heard of congenital diaphragmatic hernia (CDH), a rare and potentially life-threatening condition in which a baby is born with a hole in the diaphragm, the muscle that the body uses to breathe. This can cause the intestines and other abdominal organs to move into the chest, which prevents normal lung development. ... Read More
Regina’s journey with HLHS: Four years later
Regina was just 25 days old the first time she made the trip from her home in Mexico to Boston. Regina was born with a serious congenital heart defect called hypoplastic left heart syndrome (HLHS), resulting in the underdevelopment of the left side of her heart. Her doctors in Mexico told her parents it was ... Read More