Muriel’s story: Choosing life after loss

PHOTO: MICHAEL GODERRE/BOSTON CHILDREN’S

I was with my mom when she had a heart attack. I was only 3 years old, but I remember her falling down and the EMTs arriving and later being told she had passed away.

As I got older, I understood that my mom’s weight and health habits caused her heart disease and ultimately her death. As a kid who was always overweight, this haunted me.

Read Full Story

No holding her back: Robotic procedure gives girl freedom from urinary incontinence

little girl on the beach after robotic artificial urinary sphincter implantation
PHOTOS COURTESY OF MADI’S FAMILY

Seven-year-old Madi loves being active, whether that means dancing, doing gymnastics or riding her bike. Born with spina bifida, she doesn’t let the diagnosis slow her down — but the chronic urinary incontinence it can cause was disruptive and stressful. Known as neurogenic bladder, this condition occurs when the nerves to the bladder and urethral sphincter do not work properly and can lead to urinary retention or persistent urinary leakage.

Read Full Story

Enjoying every day: Renee’s story

renee visits with her grandfather
Renee visits with her grandfather. (PHOTOS COURTESY OF THE SEAVER FAMILY.)

Hitting double digits is a milestone for any kid, but it’s particularly special for Renee Seaver and her family. Once told that their daughter likely wouldn’t survive until age one, her parents recently celebrated Renee’s tenth birthday with her. “Renee is the heart and soul of our family,” says her mother, Michelle. “We enjoy every day we have together.”

Read Full Story

SPG47 research brings hope to families

Robbie and Molly, who both have SPG 47, hang out on a bench at Disney World
Robbie and Molly [PHOTOS COURTESY OF KASEY EDWARDS]

“Mama Kasey — I spy!” I smile. Robbie wants to play “I spy with my little eye.” She’s actually quite good and relishes the enthusiasm she gets when she’s right. In fact, recently, we were with someone who was unfamiliar with the routine. After Robbie answered correctly, she waited. Though complimented, it wasn’t enough. Robbie gently took this woman’s hand, looked her in the eye and said, “clap.”

Read Full Story