Treating vascular rings: Sisters travel more than 3,000 miles for care
Nicky Dickerhoff is no stranger to caring for children: Not only is she a neonatal nurse practitioner, but she and her husband, Jake, have eight kids themselves. “We’re experienced parents,” she laughs. So when their daughter Harper briefly stopped breathing at just 3 weeks old, Nicky was skeptical at the initial diagnosis of reflux. Repeated ... Read More
Brachial plexus birth injury: Harper’s right arm
When Harper Jane Stalker was born with a limp, unmoving right arm in 2016, her parents had never heard of brachial plexus birth injury. Their situation was not unusual. Although this type of nerve injury is relatively common, most parents haven’t heard the term and don’t know what it is. “In the beginning, we were ... Read More
Finally heard: How finding a doctor who listened helped change Carter’s life
In some ways, Carter Sousa is like any other 13-year-old: He’s obsessed with videos, loves animals, and enjoys hanging out with his friends. But for much of his childhood, Carter and his parents found themselves struggling with a frustrating and embarrassing problem that seemed to have no clear solution. Soon after he was born, Carter ... Read More
Charlee: Bouncing back after neuroblastoma treatment
Call it mother’s intuition, but leading up to her daughter’s cancer diagnosis, Erica Jensen knew something wasn’t right. At just 10 months, Charlee had started walking, and since taking her first steps the excited toddler was constantly exploring the world around her. Then, at around 15 months, something changed. It wasn’t obvious at first — ... Read More
Matthew, the ‘wee marvel’: The first gene therapy ALD recipient
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 more than 10 years ago of adrenoleukodystrophy (ALD). ALD is a degenerative condition that destroys the protective sheath surrounding the brain’s neurons. Gradually, as the disease ... Read More
Navigating the aplastic anemia journey
Hadas Asgedom is a woman with many titles: daughter, sister of 12, aunt, mother. But, after her own daughter’s journey with aplastic anemia, she may have earned the right to add another — relentless researcher. Hadas and her only child, Asada, live in Tampa, Florida, where Asada had always enjoyed theater rehearsals, soccer, and time ... Read More