Your Life, Your Health: Troy mother's plea to help daughter battling rare illness
A young girl in Troy struggles to lead a normal childhood while battling an extremely rare condition affecting her bones and causing her to start puberty at the age of 2. It's called McCune Albright syndrome, a disease affecting 1 in every 100-thousand to 1-million births worldwide. It makes someone's bones fragile and weak, which could result in skeletal deformities.
Upon first meeting Storm, she looks just like she an average kid. She is bright and friendly, loves coloring, puzzles and singing. But in reality each day is struggle - all patients with McCune Albright suffer from fibrous dysplasia which makes the bones soft and weak; to the point they could fracture at any moment. Storm's Mom says she broke three last year.
"Every doctor we see says she is the youngest with this." Mother Katie Murray tells CBS6. "She's not supposed to run, no jumping or skipping. We can't go to the playgrounds or anything, no jungle gyms."
Usually only one bone is affected. In Storm's case, it is all of them.
What's more, McCune Albright usually means an endocrine abnormality - in Storm's case precocious puberty. Not even in kindergarten, she's beginning to develop. She runs the risk of pre-mature growth spurts, something dangerous is the body isn't ready.
Storm's doctor, Director of Orthopedic Oncology at Albany Medical Center, Dr. Matthew Dicaprio says out of the handful of patients he's worked with that have McCune Albright, Storm is the youngest.
"She's probably going to have difficulty socially and psychologically with the endocrine abnormality." Dr. Dicaprio says. "With her structural abnormality she probably can't do a lot of things kids do."
Storm's care is very expensive. Between doctor visits, MRI's, and surgeries her mother Katie says financially she's tapped out. She's hoping the community can help her through this rough patch by donating to a gofundme page she started for Storm's medical bills.
Storm's doctor says she'll live a full life despite McCune Albright and drugs can help control her hormone abnormality. However, her bones may become misshapen over the years affecting her mobility and Storm will always be prone to bone breaks. There is no cure for McCune Albright.
"It's just wait and watch." Katie says. "When her bones do break they go in and do surgery and put cement in there and some rods. Then just wait for the next break."