Zaire’s superpowered heart: ‘I am Iron Man’
What do a 4-year-old from Brockton, Massachusetts and Marvel’s superhero Iron Man have in common? A lot more than you might think. Iron Man faces a heart injury that nearly kills him, but creates a suit of armor that protects his heart and gives him superpowers. Zaire was born with scimitar syndrome, a rare condition ... Read More about Zaire’s superpowered heart: ‘I am Iron Man’
Living his best life: Caring for Christian
Christian Jaspersen was wet, muddy — and having the time of his life. After an ATV ride around his family’s rural Oklahoma farm with their grandfather, he and his two older brothers plopped themselves into a nearby mud puddle, playing with toy trucks and getting wonderfully messy. “For a while, we didn’t know if Christian ... Read More about Living his best life: Caring for Christian
Having Faith: A novel approach to heart surgery
When Rachel and Rudy Fasano of New Haven, Connecticut learned they were having their first baby after three years of trying, they were overjoyed, as were their families. At Rachel’s 15-week ultrasound to learn their baby’s sex, both grandmothers were also in tow, eager to hear the news. But the visit delivered some unexpected results. ... Read More about Having Faith: A novel approach to heart surgery
Cole: Having a ball after CAR T-cell therapy
After undergoing a promising new treatment for acute lymphoblastic leukemia (ALL), Cole Malone is back to doing what he loves: playing on a flag football team with his twin brother, Michael. Cole and Michael, 14, already know plenty about teamwork. Michael served as a perfect-match donor when Cole had a stem cell transplant at Dana-Farber/Boston Children’s Cancer and Blood ... Read More about Cole: Having a ball after CAR T-cell therapy
The space between heartache and happiness: Two sons with adrenoleukodystrophy
When Paul and Liliana Rojas talk about their life, they describe it in one of two ways — the way it was before their sons, 10-year-old Brandon and 7-year-old Brian, were diagnosed with ALD, and the way it is after. Their story is one of heartbreak — but also hope, in the form of a ... Read More about The space between heartache and happiness: Two sons with adrenoleukodystrophy
Manny: Hoping new research helps others with sickle cell disease
Emmanuel “Manny” Johnson, Jr., shares many loves with his little brother, Aiden — from basketball to video games. One thing he wishes they did not share is sickle cell disease (SCD), so Manny is playing a role in a new effort to improve treatment for patients like 7-year-old Aiden, himself and others living with the inherited blood disorder. ... Read More about Manny: Hoping new research helps others with sickle cell disease
Returning to the stage after cubital tunnel syndrome
Bruno Silva can’t imagine his life without music. He has been playing bass guitar since he was 12 years old and performs at least once a week, often more. Born in Japan to Brazilian parents, Bruno has lived and performed in England, Brazil, Spain and the United States. He started out playing along to bands ... Read More about Returning to the stage after cubital tunnel syndrome
The mystery of Jane’s left shoulder: Acute flaccid myelitis
When 5-year-old Jane Morehead tumbled off her bike in May 2017, it didn’t seem like a big deal. Jane’s dad was with her at the time, and both of them considered the fall a minor one. The whole family was surprised, therefore, when Jane had pain in her left shoulder the next day. At an ... Read More about The mystery of Jane’s left shoulder: Acute flaccid myelitis
Nicole’s Story: Dancing my way through pain
Dance is my life passion. I’ve spent more than 15 hours a week dancing for most of my 26 years — except for a period of time when hip pain forced me to stop. We dancers usually don’t express our pain; in fact, we almost like to be in pain because it means we’re working ... Read More about Nicole’s Story: Dancing my way through pain
Taking a leap of faith: Jack says goodbye to his G-tube
As they waited for their son Jack’s appointment, Marika and Josh Reuling had no indication that July 17, 2018, would be different from any other day. They chatted, glanced at the cartoons playing in the waiting room and handed Jack crayon after crayon as he happily colored a picture. It seemed like a just another ... Read More about Taking a leap of faith: Jack says goodbye to his G-tube