Abigail Jones is only two years old, but two years is much longer than she was expected to live. Abby was born with Down syndrome, a genetic disorder that has no cure. Eight weeks before her birth, doctors at a hospital in the Northeast also diagnosed her with a brain tumor in utero. Test results suggested it was an aggressive form of cancer and following her birth, Abby was placed into hospice care. When her health didn’t deteriorate as expected, she had surgery to remove the tumor — which turned out to be benign — at nine weeks old. Ten days later, she was home with her family and thriving.
Abby lives with the effects of the tumor and brain surgery daily. She has limited right-side awareness and can’t walk yet. She has more complex medical needs than most children her age, and requires ongoing medical care. Her parents, Erika and Stephen Jones of Jacksonville, have relied on Medicaid to access and afford the highly specialized care their daughter requires.
On June 26 and 27, Abby and her parents, along with representatives from Wolfson Children’s Hospital, will travel to Washington, D.C., for the 2018 Speak Now For Kids Family Advocacy Day, sponsored by the Children’s Hospital Association. During their visit, they will meet with Rep. John Rutherford, R-FL, and Rep. Buddy Carter, R-GA, about the importance of Medicaid for children and families with a medically complex child. The Jones family will be joined by Megan Denk, executive director of THE PLAYERS Center for Child Health at Wolfson Children’s Hospital.
Abby now receives care at the Bower Lyman Center for Medically Complex Children, a partnership between Wolfson Children’s Hospital, the University of Florida College of Medicine – Jacksonville, and Community PedsCare. She routinely undergoes MRI scans to monitor for tumor regrowth and changes in her brain’s fluid. She sees physical therapy team with Wolfson Children’s Rehabilitation to gain mobility and build strength. She is monitored closely by a pediatrician, a neurosurgeon, an ear nose and throat specialist and an ophthalmologist.
“Not all children have the level of support that Abby has,” said Mrs. Jones. “Our family wants to be a voice for all kids with complex medical needs. There is a reason Abby is here with us. She is going to make a huge impact on the world.”
Follow #AbbyGoestoDC on social media to see the Jones family’s adventures during the 2018 Speak Now For Kids Family Advocacy Days June 26–27.