Meet Abby: 2018 Family Advocacy Day Champion
Abby is participating at 2018 Speak Now for Kids Family Advocacy Day from June 26-27 in Washington, D.C. During the event, Abby will share information about her health journey and the importance of children’s health care with members of Congress. Below is her story.
Pregnancy is often marked by joy and anticipation for a child’s future. Imagine being told that your baby would not survive long after birth, if at all, due to a large brain tumor discovered in utero. That’s what happened to Erika and Stephen Jones when a large tumor was spotted on their baby’s brain during a 30-week ultrasound.
The couple had already been told several weeks earlier that their daughter, Abby, would have Down syndrome, and they had come to terms with the news. But an aggressive tumor thought to be cancerous was something they just could not accept.
Nevertheless, when the couple brought baby Abby home after her birth, they prepared to administer pediatric hospice care. But instead of deteriorating, baby Abby thrived, giving her parents hope to seek a second opinion with doctors at Boston Children’s Hospital. Nine weeks after her birth, despite a prognosis of an untimely death, Abby’s tumor was removed and found to be benign.
Abby continues to receive care at the children’s hospital in her hometown of Jacksonville, Fla. — Wolfson Children’s Hospital — where she goes to have follow-up MRI scans to monitor for tumor re-growth and fluid changes, and to visit the hospital’s Bower Lyman Center for Medically Complex Children.
At Wolfson, Abby sees the therapy team to gain mobility, independence and strength, as well as other specialists including a neurosurgeon, ear nose and throat specialist and an ophthalmologist. Because of the lingering impact of the tumor and surgery, Abby has limited right-side awareness, and she’s not able to walk yet.
She’s also had ear tubes placed in her ear canal to help drain excess fluid and allowing her to hear better. Abby’s family relies on Medicaid to cover her complex medical needs, and is extremely grateful for the specialized care they have received at children’s hospitals.
“Not all children have the level of support that Abby has,” acknowledged Erika. “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.”
Join us in welcoming Abby to 2018 Family Advocacy Day!