No labels or limits with Apert syndrome: A letter to parents
Dear parents, If you’re reading this, your child might have been recently diagnosed with Apert syndrome and you don’t know what comes next with this rare genetic disorder that causes fusion of your child’s skull, hands, and foot bones. Or maybe you’ve been in the Apert world for a while and are looking for people ... Read More about No labels or limits with Apert syndrome: A letter to parents
The power of a second opinion for Merritt’s spina bifida care
In March 2020 — at the height of the COVID-19 lockdown — Jenna, Brian, and their 2-year-old daughter Merritt were practically the only passengers on their flight from Charlotte to Boston. Waiting for them in Massachusetts were Dr. Benjamin Warf, Dr. Carlos Estrada, and other experts from the Spina Bifida and Spinal Cord Conditions Center ... Read More about The power of a second opinion for Merritt’s spina bifida care
Ted Williams, chocolate milkshakes, and a pioneering heart team: What Bruce remembers about his heart surgery 65 years later
Bruce Chansky was the star of his neighborhood after he had heart surgery at Boston Children’s. It was 1959, a time when a child having heart surgery wasn’t common — it was newsworthy. Eleven-year-old Bruce was featured in his hometown newspaper, which only furthered his celebrity in Beverly, Massachusetts. Friends, neighbors, and strangers all wanted ... Read More about Ted Williams, chocolate milkshakes, and a pioneering heart team: What Bruce remembers about his heart surgery 65 years later
For Ana Sofia: How one mom found prenatal care for fetal pleural effusion
Alexandra is the first to admit she asks a lot of questions and needs to know details. “I’m curious about everything, and I want to know everything,” she says. “I do my research. I’m a pretty resourceful person.” It’s something she says can be off-putting to some people, but it’s also what saved her daughter’s ... Read More about For Ana Sofia: How one mom found prenatal care for fetal pleural effusion
A seat at the table: One family’s story of finding advanced care for hydrocephalus
To her parents, everything about 6-month-old Stella is a miracle. Rose and Vlad were ecstatic to learn they were expecting a baby after Rose was diagnosed with uterine fibroids. When Stella arrived months early, they were astounded by her ability to keep growing stronger. And when her doctors discovered a buildup of cerebral spinal fluid ... Read More about A seat at the table: One family’s story of finding advanced care for hydrocephalus
‘Supported and heard’: Harven gets care for an anorectal malformation
Like lots of 3-year-olds, Harven Gifford has a great imagination. Lately, he’s taken to roaring loudly and pretending that he’s a lion. But it wasn’t long ago that his parents, Heather and Brian, had to be Harven’s voice, when an unexpected health concern turned them into strong advocates for their son. Although Harven’s delivery went ... Read More about ‘Supported and heard’: Harven gets care for an anorectal malformation
Healing the heart, mind, and spirit
For most of her life, Siena Tancredi worried about her heart beating too fast. She has long QT syndrome, an inherited condition that affects the heart’s electrical rhythm and can cause fast, erratic heartbeats. From the time she was diagnosed at age 10 and into adulthood, she avoided any situation that would potentially cause her heart ... Read More about Healing the heart, mind, and spirit
Helping Jasmine manage Sturge-Weber syndrome before symptoms start
Sturge-Weber syndrome is a rare neurovascular disorder that increases the risk of seizures in infants due to abnormal blood vessel development in the brain. Almost 90 percent of children with Sturge-Weber experience their first seizure before age 2, which makes proactive, seizure-preventive care important in minimizing the risk of long-term brain injury. Finding such care, ... Read More about Helping Jasmine manage Sturge-Weber syndrome before symptoms start
A partner through amniotic band syndrome: Jace’s story
Jace is a happy, energetic 9-month-old whose big brown eyes light up a room. He’s adored by his parents, Kait and Evan, who not only delight in being first-time parents but are also incredibly appreciative of the care that helped save their son. It was care that took a village, Kait and Evan say — ... Read More about A partner through amniotic band syndrome: Jace’s story
Whether she’s embracing school, sports, or music, Lindsey shows how Williams syndrome can be managed
One of the first things Lindsey Franco will tell you is, “I like being me. I like being happy.” The 19-year-old has a lot to be happy about. She attends a post-high school transition program that helps young adults expand their social and life skills. There, she does all the things she enjoys, including playing ... Read More about Whether she’s embracing school, sports, or music, Lindsey shows how Williams syndrome can be managed