DENVER (CBS4) – The family of a Colorado Springs girl with who has a rare neurological and skin disorder is hoping to educate the public about her syndrome.
Gracie Sue Manley suffers from Sturge-Weber Syndrome. The congenital disorder affects her health and her appearance, but Manley remains funny and friendly, and she’s unafraid to tell others “she was born this way.”
Sturge-Weber’s most obvious manifestation is a port-wine birthmark that covers the left side of her body. She was born with glaucoma in one eye, but her vision is an impressive 20/40.
As a baby, she also had debilitating seizures.
“She would just start having them and they wouldn’t stop,” her mother Laura said.
Just after her first birthday, Manley had brain surgery and the seizures stopped.
Her doctor, Dr. Emily McCourt from Children’s Hospital, calls Manley a “superstar” and praises her will to overcome the issues that come with having the syndrome.
“(Sturge-Weber Syndrome) is not hereditary in that you didn’t get it from your mother or your father but there’s a mutation that occurs when in utero,” McCourt said.
As she gets older, her parents say she is aware of the stares some people give her because of her appearance.
“Now that she’s 5 I think she notices that she’s different, so that’s a struggle,” Laura said. “She’s actually in counseling to kind of deal with that.”
Her mom Laura calls Manley “Amazing Grace.”
“It’s not contagious, you know. Gracie’s just like everybody else,” she said. “She’s beautiful.”
McCourt and other experts from Children’s Hospital will be speaking this weekend at an international Sturge-Weber convention in Denver.