Stories about: Department of Neurology

Daughter’s neurosurgery inspires mom to give back

Kannon, who had hydrocephalus, is now a happy 5-year-old.Danielle Parkman isn’t a doctor or nurse. In fact, she’s not a clinician of any kind. And yet every day she makes the lives of patients in the Boston Children’s Hospital Division of Pulmonary and Respiratory Diseases a little bit easier.

As the Senior Administrative Associate for Pharmaceutical Benefits and Prior Authorization Specialist, Danielle is responsible for getting approvals for pharmacy benefits and prior authorizations for all pulmonology patients. It’s a daunting task, but she doesn’t take no for an answer.

“I love my job, and I love fighting for my patients,” says Danielle. “I know I’m making a difference. I can also empathize with many of the parents because I’ve been in their shoes.”

Read Full Story | Leave a Comment

Stronger together: Families of girls with SPG47 find support in each other

Imagine your child is diagnosed with a rare neurological condition. So rare that there are only a handful of reported cases, and those are from halfway around the world.

This was the case for Chris and Kasey Edwards of Massachusetts and Kevin and Angela Duffy of Pennsylvania. Their daughters’, Robbie and Molly, are among only 11 children in the world to be diagnosed with an extremely rare genetic disorder, called spastic parapalegia-47 (SPG47).

“When they told us how rare this was, our minds were going in a thousand directions,” says Kasey, Robbie’s mom. “We didn’t know what to think.”

The two families thought they were all alone, until they found each other. And on a recent warm fall afternoon, these two adorable girls and their parents met in person for the first time at Boston Children’s Hospital, where they both receive care.

Read Full Story | Leave a Comment

The closest of calls: Infant’s DSM cured with life-saving brain procedure

madelyn-brain-surgery-dsm-2

Six-year-old Madelyn knows why she has to see a special team of doctors twice a year: she had brain surgery as a baby. But she doesn’t yet understand the full weight of the story.

“She knows there was a problem with something in her brain, and she had to go to Boston for special care, where the doctors made it all better,” says her mother, Julie. “She knows the team still checks in on her to make sure she stays healthy.”

As she gets older, Madelyn will be able to comprehend more and more. Someday she’ll realize not only just how lucky she is to be alive, but the incredible ordeal her parents went through when she was just 5 months old.

A mysterious illness

It was Valentine’s Day, 2011. Six-month-old Madelyn was sick — VERY sick. Her worried parents, Julie and Matt, took her to her pediatrician, who thought she was suffering a virus because she did not have a fever.

Madelyn in the hospital with dural sinus malformation
Madelyn in the hospital with DSM

“We took her home, but this virus wasn’t going away,” says Julie. “Eventually it got so bad we had to take her to the Southcoast Hospital emergency room (ER). She wouldn’t stop vomiting and couldn’t keep anything down, not even medicine.”

In the ER, Madelyn was so limp “she felt like a rag doll in my arms,” Julie says. That tipped off the doctor on call, Dr. Sara McSweeney-Ryan, to order an MRI.

“Dr. McSweeney-Ryan is the first doctor I credit with saving Madelyn’s life,” says Julie.

On MRI, it was clear that there was a problem in Madelyn’s brain, and her life was in danger. McSweeney-Ryan knew exactly where Madelyn needed to be.

“We thought, it’s already 1 a.m., maybe we can stay the night,” says Julie. “But they ordered an ambulance to take us to Boston as quickly as possible. There was no time to lose.”

Read Full Story | Leave a Comment

Samantha’s story: Partnering with BACPAC program to end bullying

During the fifth grade when Samantha was 10 years old, she was bullied by a male classmate. She remembers walking through the halls of her elementary school and hearing the bully call out these words:

“Why are you on this earth? You don’t deserve to be alive.”

The bullying followed her every day.

“I didn’t want to go to school because I knew he would be there. I was afraid,” says Samantha, now 12.

Weeks into the school year, the harassment and intimidation escalated and turned physical.

“It was usually mental [abuse], but at one point in fifth grade the bully came up to me, and he punched me on the back,” says Samantha quietly. This was the breaking point.

“I had enough,” says Samantha’s mother Karen. “The verbal and physical abuse needed to stop.”

Read Full Story | Leave a Comment