Meet Arianna: 2020 Family Advocacy Week Champion
Arianna is participating in Speak Now for Kids Family Advocacy Week from August 10-14, 2020. Through this special event, Arianna and her family will share information about her health journey, Johns Hopkins All Children’s Hospital’s role in providing Arianna with necessary health care services, and why the public and our elected officials must invest in the future of kids like Arianna.
Arianna was diagnosed with spina bifida in utero at 20 weeks.
“When we first heard ‘spina bifida,’ we didn’t know what to think,” says Rachel, Arianna’s mother. “It was easy to imagine the worst. We didn’t know how she would be affected, or what her future would be like.”
Since she’s been coming to Johns Hopkins All Children’s Hospital for care, Arianna has had both a shunt revision and tethered cord release surgery. Her scoliosis is severe and she’s had metal growing rods placed to aid continued growth. The rods have been lengthened once, but the procedure was harrowing. Arianna had an allergic reaction and almost died.
Now 11, Arianna needs a spinal fusion to repair her scoliosis. This will be her 17th surgery to date.
“We are so fortunate to have Medicaid,” says Abigail, her grandmother. “It truly helps out with the expensive equipment and all of Arianna’s medical needs.”
Medicaid also ensures Arianna gets the best care at Johns Hopkins All Children’s Hospital in St. Petersburg, Florida. She has a wonderful pediatrician and is currently approved for all the physical and occupational therapies she needs to thrive.
Today, Arianna is doing great. Spina bifida has many challenges, but Arianna doesn’t seem phased by them. She is not wheelchair-bound; she is a wheelchair user.
“It is her chariot!” says Abigail.