My daughter, Hannah, was born with Rett Syndrome. She requires a wheelchair and feeding tube. She also struggles with seizures, GI issues, and scoliosis.
Not only does she have to fight her disease, but we are constantly battling for healthcare. We have the unique perspective of having lived in two different states with different Medicaid requirements. In Kentucky, she had full coverage because of her disease, but in Texas, she doesn’t meet the requirements. Our insurance does not pay for some of her medicine or equipment, so she has to go without, we pay out of pocket, or we have to appeal their decisions. We are currently going through an appeal to get her a new wheelchair because she has grown out of her current one. This is just one example of the constant battle to make her life as pain-free as possible.
Hannah fully understands everything and still faces each day and struggle with amazing strength. She brings joy into everyone’s life and her smile and laugh light up a room. She has changed our life and perspective, and she deserves healthcare.
There are many children in the same situation as Hannah. I will continue to be my daughter’s and their advocate until the policymakers expand Medicaid.