Maternal-fetal care helps ‘All Smiles Myles’ beat a CPAM
Myles Gifford is “fearless and defiant,” says his mother, Katy. “We’ll be in big trouble when he’s a teenager,” she laughs. “But it’s benefited him so far.” In fact, Myles, now more than 18 months old, needed to draw on his perseverant personality almost as soon as he was born. Katy, her husband, Mike, and ... Read More about Maternal-fetal care helps ‘All Smiles Myles’ beat a CPAM
With support for genetic condition trisomy 18, Brooklyn ‘tells her own story’
Erin and Tim Haggan quickly realized they would always be seeking answers after learning the child they were expecting had trisomy 18. It is a life-threatening chromosomal condition, and only about 10 percent of children live beyond their first year. Those who survive grow slowly and often have congenital heart defects (CHD) and other organ anomalies. The couple ... Read More about With support for genetic condition trisomy 18, Brooklyn ‘tells her own story’
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 about Innovative flatfoot surgery releases Quinn’s inner athlete
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 about Adjusting to sitosterolemia took time, but Justin is now on a healthy path
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
‘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 about ‘To do what’s best for Marley’: One family’s experience with a vein of Galen malformation
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 about Sonny’s story: How an online Apert syndrome community set one family on a path to Boston
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 about There’s no stopping Jack: His journey with craniosynostosis
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 about Advocating for herself: Drew takes lymphedema in stride
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