FAMILY FUNDRAISES FOR TEEN WITH RARE DISEASE

For the past month and a half, it's been a waiting game for the Livingstone family.

In mid-January, 16-year-old Jessica Livingstone was diagnosed with moyamoya, a rare cerebrovascular disorder that constricts or closes the carotid arteries that deliver blood to the brain. Experts say her condition is genetic.

Since January, Jessica has had three strokes as a result of the disorder and lost peripheral vision in her left eye and mobility in her left hand.

Her parents, Bill and Barbara Livingstone, are hopeful Jessica will improve with surgery. Doctors advised two indirect bypass surgeries, which dissect the temporalis muscle (located around the temples) and place them on the surface of the brain to form a new blood supply.

Her first surgery occured on March 8 at Hackensack University Medical Center, and her second surgery will likely be sometime in June, according to her father.

The surgery went well, according to her parents Bill and Barbara. Once Jessica returns home from the hospital, she will have to stay at home in quarantine for two weeks to safeguard against infection. At least one of her parents will need to watch her around the clock to make sure she doesn't have another stroke or seizure. Jessica is at a greater risk for having a stroke or a seizure in the next couple of weeks because her brain could swell since the surgery was just completed and the incision on the side of her head from the operation still needs to heal.

Life has not been the same for the family, who live in Emerson. Jessica hasn't been able to attend school. She is a sophomore at Emerson High School, where she is a cheerleader and honor roll student.

"It's devastating," said Barbara Livingstone. "This disease has robbed her of her teenage years. I want to see her get her life back."

And her parents need to watch her around the clock to make sure she doesn't suffer another stroke.

"Someone always has to stay with her," Bill said. Barbara, a teacher at St. John's Academy in Hillsdale, has had to take off from work. Bill, too, has had to take time off from his job as a mail carrier in Little Falls, the town where he grew up.

And medical bills from are starting to add up.

Their son, Daniel, has started a Go Fund Me campaign to raise money for the expenses. The website is https://www.gofundme.com/jessicas-medical-fund-and-recovery.

"Please keep my beautiful sister in your prayers," Daniel, a student at Montclair State University, wrote in the online campaign letter. "We are striving each and every day to give her the full and healthy life she deserves."

As of Wednesday, the campaign had raised $16,030. Among the donors have been Daniel's professors and Little Falls residents who live along Bill's mail route.

Barbara said her son has been helpful throughout the process and offered to give blood or anything doctors needed from him to make his sister better. And Jessica, she said, has been courageous throughout her ordeal.

"Both of my children are heroes in this," said Barbara Livingstone.

After both surgeries, Jessica will need physical therapy. Her parents plan to home-school her after the second surgery, and then they hope to send her back to school part-time.

She will need to be tested every couple of years to make sure the arteries leading to her brain stay open, her father said.

The Livingstones say they can't thank everyone enough for their generosity. Barbara says the campaign has an extra benefit: "I hope awareness is raised for learning how to treat this disease," she said.