Abby's road takes a turn for the better

Abigail Noelle Jones loves life and everyone in it. She waves hello to strangers every chance she gets and enjoys playing with her two sisters, Audrey and Ansley, mimicking their every move.

But “Abby” is not like your average 2-year-old girl going on 3. She was born with Down syndrome, a genetic disorder with no cure. But that prenatal diagnosis was not the most startling. Six weeks before her birth, Abby was also diagnosed with a large brain tumor, thought to be cancer, and was put into hospice care.

Doctors gave her only a short time to live. But brain scans taken six weeks later convinced doctors that Abby’s tumor was actually shrinking, not growing. Today, Abby is still experiencing the effects of brain damage from the surgery to remove the tumor that turned out to be benign. She has limited right-side awareness, and she’s not able to walk or even crawl just yet. But her parents, Erika and Stephen Jones of Jacksonville, aren’t worried.

“When you look at her medical history, she’s doing more than anyone ever thought she could,” said Erika, who has relied on Medicaid to help access highly specialized care for her daughter’s complex medical needs since Abby was six months old. “She wants to move and she’s motivated to learn.”

Abby attends physical therapy twice a week, occupational therapy once a week, and speech therapy every other week. She also sees a rehab specialist, a pediatrician and a pediatric physiatrist affiliated with Wolfson Children’s Hospital and the Bower Lyman Center for Medically Complex Children. She recently participated in a three-week, intensive therapy program to help fast-track her motor skills. 

“We’re hopeful that she will take her first steps soon,” said Erika Jones, a mother of three and a registered nurse.

The Jones family is taking their story to Capitol Hill on June 26 and 27 by attending the 2018 Speak Now for Kids Family Advocacy Day in Washington, D.C. Abby and other medically complex children like her are urging Congress to protect, not cut, children’s Medicaid funding. 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 who need ongoing, specialized care.

“Not all children have the level of support that Abby has,” Erica Jones said. “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.”