In the summer 2013, Hailey turned three. She also got sick.
Her mom, Joy, says it was pretty standard flu symptoms, so she didn’t think anything of it. Until it didn’t go away. When she decided to take Hailey to a doctor, it took multiple visits to the doctor, Urgent Care, and even the Emergency Room to determine the diagnosis.
Finally, the ER doctor at Children’s found that Hailey had an arteriovenous malformation in her brain (called an AVM). It was the size of a golf ball and had already ruptured, causing a severe brain bleed. Two days later, Hailey underwent what would be the first of many procedures. A few weeks later, on July 15, she had her first craniotomy, a 10-hour surgery with a week-long hospital stay in the ICU and on the neurology floor. The doctors were optimistic.
But on Nov. 1 of that same year, on a routine follow-up, they found remains. She had a second craniotomy in December. It wouldn’t be her last.
Hailey suffers from a rare congenital disease called Arteriovenous Malformation (AVM). Joy explains, “It’s life threatening, with no known cure, and so rare that there aren’t many support groups. So Vivian’s Victory was so important. We didn’t have many places to turn.”
How did Vivian’s Victory help?
Joy describes the frustration following the diagnosis: “We went from being a healthy family of four. Suddenly, very large monthly payments to Children’s made money tight. That was on top of the stress of the diagnosis and surgeries. All the sudden you have a lot more on your plate than you started with. You’re trying to take care of your child and everything at home.”
When Hailey’s family got home after one of her early surgeries, Vivian’s Victory sent a donation that helped to cover groceries as Joy and her husband figured out how to go forward. During that time, VV also sent a note of support. Joy says, “That was what we needed. We needed to know people understood how we felt as a parent. It’s the most helpless thing in the world. To have them say ‘we know where you’re coming from’ meant the world.”
Now, five years later, Hailey is still fighting. She still has AVM in her brain. So the medical bills continue and even with additional research, there is a good chance she will fight her entire life. “She deals with a lot of areas that make her different,” says Joy. “But she’s a fighter.”
And Vivian’s Victory will keep on fighting with her!