Xiomara

Age 6, Maryland

Meet Xiomara. After spending the first five months of her life in the Neonatal Intensive Care Unit at the hospital, Xiomara is eager to explore the outside world. She loves going to the playground, library, and school. She enjoys meeting new people and visiting new places. Most of all, she loves playing with her big brother.

Xiomara was born with multiple serious medical conditions affecting her airway, lungs, heart, and kidneys.  She uses a tracheostomy to breathe, a ventilator for additional respiratory support, a feeding tube for all her nutrition, and a wheelchair to explore the world around her.

Access to quality health care covered by our health insurance helped Xiomara survive several ICU hospitalizations and transition to home with ongoing outpatient care. Medicaid has helped Xiomara receive the habilitative therapies she needs to help her become independent, including physical therapy, occupational therapy, feeding therapy, and speech therapy.

If annual/lifetime caps or penalties for pre-existing conditions are reinstated, she could be uninsurable and our family could be bankrupted paying for her care ... and she still wouldn’t get the medical care she needed thus severely impacting her quality of life. Health care is a matter of life and death for children like Xiomara.

Submitted by Elena Hung, Xiomara’s mother