Meet Anna. She is a typical 5 year old in many ways. She loves to play with her brothers. She loves Play-Doh and to play with her dolls. She is very into princesses right now. Anna loves to sing along to songs from Disney movies.
Anna’s medical diagnoses are cerebral palsy, tracheal bronchial malacia, subglottic stenosis, chronic lung disease, metabolic bone disease, allergies, eczema, and global developmental delays. She has a tracheostomy to breathe and uses a gastric tube to be fed. Anna needs oxygen at home intermittently for when she gets sick. Anna and her twin brother were born at 25 weeks in Arkansas. We became their foster parents shortly after birth. The prognosis all along was very grim for Anna. Several times a DNR was signed for her while she was still a foster child. After her second birthday we were fortunate and able to adopt her and her brother. In 2014 Anna developed a bone condition that caused over 30 bone breaks in 18 months. Due to this new condition the military stepped in to have my husband move so that she could be seen by Walter Reed in Maryland. In May 2015 Anna and I were flown by medical flight to Bethesda.
Anna’s current medical needs includes several machines to maintain her life here in the home. Anna is wheelchair bound at times. She also needs a medical bed to keep her safe while she is asleep. Anna attends 6 different therapies a week and has 3-6 appointments with specialist a month. We are currently taking her to Cincinnati Children’s Hospital for some of her more specialized care.
My husband has spent the last 22 years in the US military. Being military has afforded us very good health coverage but it does have some flaws. In order for Anna to be seen in Cincinnati we have to have a copay. Her cap ($1,000) was met 4 weeks after the plan started. Anna also needs a specific machine that the military health system deems experimental. This machine costs around $15,000. Medicaid has picked this cost up for us. Without this machine Anna spends 75% of her life in a hospital.
Once my husband retires from the military we will be responsible for a much larger copay. In Virginia this copay should be paid for by Medicaid. If this bill goes through, we could lose Medicaid. This would be devastating for our family. We could be one illness away from being bankrupt. The lifetime caps also affect us. Anna spent over 100 days in the hospital in 2015. Her medical bills were well over $1,000,000 for that visit alone. The clause about pre-existing conditions also applies, and applies to multiple members of our family.
Medicaid also pays for her nurse to attend school with her. Without a nurse Anna cannot attend school. She has came so far; she deserves to see how far she can go.
We know the ACA isn’t perfect but it seems more effective to fix what we have rather than recreate the wheel.
Anna has fought so hard to be here. She was once considered to be in a vegetative state, but look at her now and she is head of her class. Spend five minutes with her and you will see how truly amazing she is.
Submitted by Anna’s mother, Angie