Innovative flatfoot surgery releases Quinn’s inner athlete
By the time he was 10, Quinn’s parents had tried almost everything. Dawn would sometimes massage his feet to relieve the pain and tightness caused by flexible flatfoot, a condition in which a child has very little or no arch in their feet. Joseph did physical therapy exercises with him at night. But despite their ... Read More
Adjusting to sitosterolemia took time, but Justin is now on a healthy path
After Justin Zhao was diagnosed with the rare metabolic disorder sitosterolemia five years ago, the toughest part of treatment was watching his three siblings eat chocolate when he couldn’t. Sitosterolemia is a genetic disease that causes the fatty substances, or lipids, from plant-based foods such as nuts and vegetable oils to build up in the arteries, increasing ... Read More
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
‘To do what’s best for Marley’: One family’s experience with a vein of Galen malformation
Last summer, Savannah and Brian were eagerly awaiting the birth of their first child. Savannah was scheduled to deliver their daughter Marley in late September, and they couldn’t wait to hold her, feed her, dress her up, and relish in the new-baby joy. But the Georgia couple soon learned that parenthood tends to throw plans ... Read More
Sonny’s story: How an online Apert syndrome community set one family on a path to Boston
Sonny Daniel has had a busy summer. Between traveling, camp, and time with family and friends, this 4-year-old has constantly been on the go — something his parents, Kellie and Josh, are incredibly grateful for. Their gratitude stems a lot from seeing how far Sonny’s come in his journey with Apert syndrome, a genetic disorder that ... Read More
There’s no stopping Jack: His journey with craniosynostosis
Jack is almost 2 years old and loves to swim, chase his older sister around the house, and just bring lots of laughs to everyone he meets. For such a happy kid, he’s had an uphill battle to get to this point — starting when he was born. “Something wasn’t right with the shape of ... Read More
Advocating for herself: Drew takes lymphedema in stride
Five-year-old Drew Rossi has no problem explaining why she wears a daily compression garment. “I have lymphedema,” she tells anyone who asks about the compression sock on her left leg. “She took this diagnosis and ran with it,” says her father, Don. “She’s already a great advocate.” Don and his wife, Kerri, knew that something ... Read More
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
‘I did it!’ Micah is thriving after maternal-fetal care for a CPAM
Dr. Marla Lipsyc-Sharf is no stranger to the field of medicine: As a medical oncology fellow, she’s familiar with the human body and the health challenges that can arise. But it still came as a shock when — 20 weeks into a healthy pregnancy — she and her husband, Jeremiah, learned during an ultrasound that ... Read More
‘Our silver lining’: Mila is thriving after CDH repair
For Katie, last St. Patrick’s Day wasn’t an occasion for revelry. Instead, it was the day an ultrasound revealed that their daughter, Mila, would be born with a congenital diaphragmatic hernia (CDH). In this condition, the diaphragm — the layer of muscle and tissue between the chest and abdominal cavity — forms with a hole ... Read More