"We are truly lucky"

March 20, 2007 09:00 pm

— NEWBURYPORT | Three years ago, Newburyport residents Chris and Carrie O'Donnell didn't know whether their newborn son Brady would ever be able to walk or speak.
Brady was born with a rare disease called linear nevus sebaceous syndrome that caused unsightly lesions on his face, and doctors worried that the disorder might cause Brady to suffer seizures that could leave him permanently disabled, both physically and mentally.
After years of intensive and extraordinary treatment at Children's Hospital in Boston, Brady is a healthy 3-year-old and developing normally. His inspiring story caught the eye of the Children's Miracle Network, an organization of children's hospitals that chose Brady as one of 54 "Miracle Children" from across the country.
The recognition brings with it a chance to celebrate. Yesterday the O'Donnells visited Gov. Deval Patrick and Boston Mayor Tom Menino at the Statehouse, where Brady was recognized. On March 28, they will join other "Miracle Children" and their families in Washington, D.C., for a White House reception with President Bush before lunching at the Capitol.
After four days in Washington, the O'Donnells will be treated to a visit to Walt Disney World in Florida, where Carrie O'Donnell is scheduled to be interviewed by an as-yet-unnamed celebrity. The interview will be aired later in the year as part of the Children's Miracle Network Celebration.
"It's such a crazy turn of events," Carrie O'Donnell said. "We really won the lottery in that Brady is OK. So many kids like Brady don't get happy endings like this. All of this recognition just takes it even further."
The celebration comes after some trying times.
After Brady made it through his first year without suffering a dehabilitating seizure, the family's focus turned toward removing the raised yellow birthmarks that covered his face and head.
Doctors implanted tissue expanders under his skin and gradually enlarged them by injecting them with saline on a weekly basis. Each treatment lasted weeks, so pain-killers were not an option.
Soon, Brady began to show signs of post-traumatic stress, becoming terrified at the sight of a syringe or the smell of rubbing alcohol. Brady's last surgical procedure was completed more than a year ago, and treatment for his post-traumatic stress has also been effective.
"It's been amazing. So many things could have gone wrong, but we've been truly lucky," Carrie O'Donnell said.
O'Donnell said she wants to use this moment of public recognition to advocate for other children in need of medical care.
"My son's life would have been very different if we hadn't found this doctor at Children's hospital," she said. "It shows how important health care and care for children with special needs is. It's something that our leaders need to remember when they're making decisions."

Photos

Brady O'Donnell, 3, front right, made a trip to the Statehouse with his mother, Carrie, father, Chris, and brother, Chris, where he was honored as the state’s “Miracle Kid of the Year.” O’Donnell, who was born with linear nevus sebaceous syndrome, a rare disease, has received enormous amounts of medical treatment and is a happy, energetic boy.