Archive for international
It takes a village and the world: Tariq’s care for Tourette syndrome
When your child is sick but you can’t figure out the cause or how to fix it, it can leave you feeling helpless and frustrated. It can also test how far you’ll go for answers. Just ask Salem of the United Arab Emirates (UAE), who moved with his family to Boston so his son Tariq ... Read More about It takes a village and the world: Tariq’s care for Tourette syndrome
Care for a prince: One family’s inspiring journey for encephalocele repair
To hear Peter and Eunice of Kenya tell the story of their son, Prince, is to hear about the power of hope, the best of humanity, and the interconnectivity that makes the world a small place after all. Hope in the hopeless In March 2022, Eunice was about five months into her pregnancy when a ... Read More about Care for a prince: One family’s inspiring journey for encephalocele repair
From Pakistan to Boston: Faiz finally found help for his complex heart condition
Don’t let his shy smile fool you. In his hometown of Lahore, Pakistan, 6-year-old Muhammad Butt is known by the nickname “Faiz the fighter.” Faiz had long defied the predictions of local doctors who said the heart surgery he needed would be complicated and instead advised his parents to enjoy the time they had with ... Read More about From Pakistan to Boston: Faiz finally found help for his complex heart condition
Pieces at work: Luca’s experience with Apert syndrome
Luca Paolacci, 24, is pursuing his bachelor’s degree in mechanical engineering. It’s a serendipitous major given that it studies how pieces come together to create specific force and movement, and Luca’s personal story is a study of the opposite: how creating separation can build strength, movement, and dexterity. “It has always fascinated me how tiny ... Read More about Pieces at work: Luca’s experience with Apert syndrome
Weathering the storm of Apert syndrome: João’s story
After a “perfect” pregnancy in 2017, Natalia and Igor of Brazil were excited to meet their third child. They were shocked when João was whisked away moments after delivery. “Up until the day before he was born, everything seemed very normal,” says Natalia. “But once he arrived, we could see immediately that something was wrong: ... Read More about Weathering the storm of Apert syndrome: João’s story
Superando as dificuldades da síndrome de Apert: a história do João
Depois de uma gravidez “perfeita” em 2017, os brasileiros Natália e Igor estavam emocionados por conhecer seu terceiro filho. Eles ficaram chocados quando os médicos arrebataram João uns instantes após o parto. “Até o momento em que ele nasceu, tudo parecia muito normal”, afirma Natália. “Mas quando ele chegou, imediatamente percebemos que havia algo errado: ... Read More about Superando as dificuldades da síndrome de Apert: a história do João
Matthew, the ‘wee marvel’: One of the first ALD gene therapy recipients
When the Elliott brothers are asked how many siblings they have, they always say, “four.” It’s a way of honoring the memory of their eldest brother, Marc, who died in 2010 from adrenoleukodystrophy (ALD). ALD is a degenerative condition that destroys the protective sheath surrounding the brain’s neurons. Gradually, as the disease progresses, symptoms grow ... Read More about Matthew, the ‘wee marvel’: One of the first ALD gene therapy recipients
From Toronto to Boston: Osteochondritis dissecans, hockey, and hope
Hockey is a fast and physical sport. Players need to think and act quickly as their team members, opponents, and the puck zip around the ice. Wherever the puck goes, high-speed collisions often follow. Osteochondritis dissecans is a joint disorder in which a segment of bone and cartilage starts to separate from the rest of ... Read More about From Toronto to Boston: Osteochondritis dissecans, hockey, and hope
From South Africa to Boston: Kyleigh’s four-year search for good heart health
Kyleigh Kista had three open-heart surgeries in just the first 18 months of her life. But instead of progressing, her health was rapidly deteriorating by the time she reached 3. Her doctors said there was little else they could do, except make her a candidate for a heart and lung transplant. It was shattering news ... Read More about From South Africa to Boston: Kyleigh’s four-year search for good heart health
One family, two very different clubfoot experiences
Theresah Boateng and her daughter Eno Agyapomaa Agyemang both have strong wills and outgoing personalities. Both were born with a foot deformity called clubfoot, and both received treatment at Boston Children’s Hospital. Yet their experiences differ in many ways. Theresah’s treatment started when she was 15 years old and lasted more than two years. Eno’s ... Read More about One family, two very different clubfoot experiences