Meet Mark: 2020 Family Advocacy Week Champion
Mark is participating in Speak Now for Kids Family Advocacy Week from August 10-14, 2020. Through this special event, Mark and his family will share information about his health journey, Nicklaus Children’s Hospital’s role in providing Mark with necessary health care services, and why the public and our elected officials must invest in the future of kids like Mark.
Mark’s parents struggled to find a diagnosis until they got to Nicklaus Children’s Hospital in Miami. He was diagnosed at 9 years old with a pseudotumor ceribri and reflex neurovascular dystrophy.
After being discharged from 10 days in the hospital, Mark and his parents were supposed to see an ophthalmologist, but due to insurance reasons it proved difficult. “This was rather frustrating and confusing and took up a lot of time to get him to the right ophthalmologist that would take our insurance,” says Mercy, Mark’s mother.
Since his diagnosis, Mark has had several spinal taps and maintained ongoing treatments with a neurologist and pain management specialist for five years.
The family also participates in mental health counseling for the entire family to adapt and understand Mark’s chronic illness.
“We were fortunate to find excellent care,” says Mercy. “The hospital, and its philosophy of family centered care, have allowed us to provide open feedback. We have also learned a vast amount of information because the organization excels at having each family truly learn about the patient’s diagnosis.”
Today, Mark is doing well and is stable. He remains on medication but is not in remission. Mark is resilient, humble and intelligent.