Stories about: Our Patients’ Stories

Manny: Hoping new research helps others with sickle cell disease

Manny, who is in a clinical trial for sickle cell disease, is examined by his doctor.
Manny at a visit with Dr. Esrick [PHOTO: SAM OGDEN/DANA FARBER]
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.

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Living his best life: Caring for Christian

little boy with short bowel syndrome wearing a fedora
PHOTOS: MICHAEL GODERRE/BOSTON CHILDREN’S HOSPITAL

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 would be able to have a ‘normal’ childhood,” says his mother, Rachel. “Having these experiences now is just so special.”

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Taking steps towards Rett syndrome awareness

Every October, families from across the globe celebrate Blue Sky Day as a way to bring awareness to Rett syndrome, a neurological disorder that affects one out of every 10,000 girls born each year. On October 22, families from around Massachusetts came together to climb the steps of Gordon Hall at Harvard Medical School to symbolize their daily struggle and hope for the future. A few of those families share what Blue Sky Day means to them. 

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After heart surgery, Chris reaches new goals one step at a time

Chris, who had heart valve surgery as an adult, runs a half marathon.
Chris runs the Newburyport half marathon in 2016 [PHOTO: RACEWIRE]
Many people approach training for a triathlon as a chore, something they have to endure to reach their ultimate goal. But for Chris Wagner, training is a pleasure — one he doesn’t take for granted.

“The idea that I can get up on a given Saturday and go out and run 10 miles is a real gift,” he says. “I wake up in the morning and think, ‘I get to do this.’”

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