The brightest rainbow follows the darkest storm: Our PVS journey
Caroline is our rainbow baby, born after the loss of another child, the light and color arising after a storm passes. A rainbow baby lifts a family in desperate need of lifting. It is a beautiful thing that I hope you never experience. Caroline was born on Dec. 10, 2015. Just three months later, my ... Read More about The brightest rainbow follows the darkest storm: Our PVS journey
Beating the odds and neuromuscular scoliosis: Colin’s story
Colin Newton has a way of surprising people. Born with a rare neuromuscular disorder, he spent the first three months of his life in the intensive care unit (ICU) struggling to breathe. Two and a half years later, and eight months after he underwent spinal surgery for neuromuscular scoliosis, Colin went skiing for the first ... Read More about Beating the odds and neuromuscular scoliosis: Colin’s story
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 about Treating vascular rings: Sisters travel more than 3,000 miles for care
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 about Brachial plexus birth injury: Harper’s right arm
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 about Finally heard: How finding a doctor who listened helped change Carter’s life
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 about Charlee: Bouncing back after neuroblastoma treatment
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 about Navigating the aplastic anemia journey
It’s personal: How the Boston Children’s progeria research community brought new life to an old drug
In late November, the U.S. Food and Drug Administration (FDA) approved a repurposed cancer drug called lonafarnib to treat Hutchinson-Gilford progeria syndrome, better known as progeria — an ultra-rare incurable genetic disease associated with rapid aging. On average, children with progeria die before age 15, usually the result of rapidly accelerated atherosclerosis resulting in heart ... Read More about It’s personal: How the Boston Children’s progeria research community brought new life to an old drug
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 about A rebirth in Boston: Gene therapy turns 10
Devina’s story: Minimally invasive Foker process repairs esophageal atresia
Selina De Leon doesn’t have a background in medicine — but she does have experience being a mom. When the mother of four learned that her youngest child, Devina, had a rare birth defect, “I said, ‘esophageal what?’” she remembers. The condition, called esophageal atresia (EA), occurs when a baby’s esophagus develops in two separate ... Read More about Devina’s story: Minimally invasive Foker process repairs esophageal atresia