Stories about: Dana-Farber/ Children’s Hospital Cancer Institute

A rare disease takes a Colombian family far from home

Twins Miranda and Olivia Agudelo (with their parents) traveled from Colombia to Boston for a bone marrow transplant.

It was Sherlock Holmes’ powers of observation and deduction that made him one of the most legendary detective characters of all time. But even he might have had a hard time figuring out what was happening to Colombian twins Olivia and Miranda Agudelo.

But with a lot of medical detective work, both by their doctors at home in Colombia and here in Boston, and a lot of help from people across Dana-Farber/Children’s Hospital Cancer Center (DF/CHCC), the girls are doing well and helping doctors and researchers understand how to make bone marrow transplants safer.

A medical mystery begins…

Their mystery started in February of last year, when they were a little over a year old. “They were doing extremely well,” says their father, Alvaro Agudelo. “No flus, no colds, eating well, everything.”

But then the first problem cropped up. First, the family’s ophthalmologist in Colombia diagnosed both girls with familial exudative vitreoretinopathy, a rare problem with the blood vessels in the back of the eye.

After treatment both in Colombia and the U.S., the family went back home and back to their lives. But then their ophthalmologist noticed that neither girl’s eyes were healing properly, both also had lots of bruises.

“That’s when we found out that the girls had low blood counts across the board,” Agudelo says. “An MRI at our local hospital then revealed that both girls had small cerebellums and calcium deposits in the brain.”

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Mattel announces hairless version of Barbie doll

Mattel Inc., maker of Barbie dolls, last week announced that it would create a bald version of the popular fashion doll to support people battling cancer.

The announcement came a few months after Beautiful and Bald Barbie, a Facebook group that petitioned Mattel to make a hairless version of the doll, gained mass support online. Their mission was simple:

We would like to see a Beautiful and Bald Barbie made to help young girls who suffer from hair loss due to cancer treatments, alopecia or trichotillomania. Also, for young girls who are having trouble coping with their mother’s hair loss from chemo. Many children have some difficulty accepting their mother, sister, aunt, grandparent or friend going from longhaired to bald.

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Are medical communities the new marketing demographic?

Have you heard about the bald Barbie movement? It’s a grassroots, digital campaign asking Mattel to make a version of the doll without her trademark golden locks to benefit children with illness. According to the group’s Facebook page, which has gained more than 130,000 fans in less than a month, bald Barbie would let “children suffering cancer, alopecia and any other illness that causes them to lose their hair, feel just as beautiful as the dolls they play with.”

Regardless of how people feel about the plastic fashion icon—she’s been around for more than half a century but still seems to be a very polarizing figure; often because of her figure—the online support for bald Barbie is undeniable. Many people seem ready to overlook any issues they may have had with Barbie’s build and stereotyped past in order to focus on her potential as a cancer survival spokes doll. Here’s just a slight sample of the thousands of messages her online fans are sharing with each other:

I will keep posting all the great things about this Bald Barbie God Bless the work you are doing

I’ve forwarded it and wish I could do more. How can I help from Brazil?

Amazing idea! I re-posted a messages about a week ago that said…why don’t they make a hairless Barbie named hope dressed in pink with all proceeds going to help to cure cancer. I had no idea it was actually a work in progress! I 100% support this. I think it would make children fighting this feel good. Anything to help. And why not make dolls with other problems?! Spreading information and helping the cause or even a cure for the cause…what a Wonderful idea!

And it’s not just parents online that like the idea. Cori Liptak, PhD, a psychologist in the Pediatric Psychosocial Oncology Program at Dana-Farber/Children’s Hospital Cancer Center was recently interviewed about her support for the doll.

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