Bringing Xavien home: One family’s journey with bronchopulmonary dysplasia
Xavien Velazquez is getting ready to celebrate his first birthday. It’s a milestone for every child but especially meaningful for this little boy who has spent more than half his life away from home receiving care for bronchopulmonary dysplasia (BPD), a chronic lung disease characterized by respiratory distress that is most often seen in newborns ... Read More about Bringing Xavien home: One family’s journey with bronchopulmonary dysplasia
Unstoppable: Cairo’s journey for kidney care began even before birth
Like lots of babies, Cairo Carter was born screaming — and his parents were thrilled. “We just wanted him to scream so we knew he could breathe,” explains his mother, Alaila. The family cried tears of joy and relief, but they understood that the moment was just the first step of a long journey. “We ... Read More about Unstoppable: Cairo’s journey for kidney care began even before birth
From South Africa to Boston: Kyleigh’s four-year search for good heart health
Kyleigh Kista had three open-heart surgeries in just the first 18 months of her life. But instead of progressing, her health was rapidly deteriorating by the time she reached 3. Her doctors said there was little else they could do, except make her a candidate for a heart and lung transplant. It was shattering news ... Read More about From South Africa to Boston: Kyleigh’s four-year search for good heart health
‘They just cared about Levi’: Finding answers for a complex vascular ring
The first sign that Levi Blair Winkler would no longer have problems swallowing was when, only three days after a complex surgery, he wolfed down four chicken nuggets and an apple. Just as encouraging for his parents, Rachel and Gabe, was that he stopped talking about the bug in his throat. That’s how Levi often ... Read More about ‘They just cared about Levi’: Finding answers for a complex vascular ring
Always an athlete: Drew and Legg-Calve-Perthes disease
When he looks back on the diagnosis that forced him to stop playing sports entirely for more than a year, 11-year-old Drew Coperine is philosophical. “There is a bright side,” he says, “there is an end to it.” But when he first learned that he had Legg-Calve-Perthes disease, a degenerative hip condition, it was hard ... Read More about Always an athlete: Drew and Legg-Calve-Perthes disease
Seeds of hope for Annie: one family’s story of epilepsy care
Ten-year-old Annie Dinan experienced her first noticeable seizure just before her fourth birthday while riding in the car with her family. “I had never seen a seizure in my entire life,” her mom, Lindsay, says of witnessing Annie lose then quickly regain consciousness. “But somehow, I knew exactly what it was.” Refusing to settle Following ... Read More about Seeds of hope for Annie: one family’s story of epilepsy care
A new kidney for Kira
Kira Walker knows how to turn a Zoom call into a party. Soon after her mom starts talking, the 8-year-old appears on the screen in a purple dress worthy of Princess Elsa in Frozen. She loves that movie, plus surprise toys, painting her nails, and her “K for Kira” necklace. “All of this is new,” ... Read More about A new kidney for Kira
One family, two very different clubfoot experiences
Theresah Boateng and her daughter Eno Agyapomaa Agyemang both have strong wills and outgoing personalities. Both were born with a foot deformity called clubfoot, and both received treatment at Boston Children’s Hospital. Yet their experiences differ in many ways. Theresah’s treatment started when she was 15 years old and lasted more than two years. Eno’s ... Read More about One family, two very different clubfoot experiences
Miles for Jack: Robin sequence and the bond between a family and doctor
For runners and non-runners alike, next week’s Boston Marathon is extra special. It marks a beloved tradition for the city, and for many, it’s a chance to once again run for those who can’t and bring awareness to causes worth fighting for. For 6-year-old Jack Ryan, this year’s marathon is a chance to cheer on ... Read More about Miles for Jack: Robin sequence and the bond between a family and doctor
Amanda gets the smile she always wanted — just in time for college
One of the first things you’ll notice about Amanda Altemus is her big smile. She’s a proud Clemson Tiger and excited to talk about how she is in the university’s post-secondary education program for students with intellectual disabilities. When she’s not studying, she loves rooting for the Clemson football team, watching YouTube videos, and listening ... Read More about Amanda gets the smile she always wanted — just in time for college