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Medicaid Matters for Kids Mondays - Rowan

Speak Now for Kids is celebrating Medicaid’s 54th birthday with blogs highlighting the importance of Medicaid in children’s access to health care. This week we spoke with Rowan’s mom, Kate. Rowan is a Speak Now for Kids Family Advocacy Day alum and current patient at Dell Children’s Medical Center of Central Texas.

I advocate for my child’s health care by speaking up for her needs. Though her disorder is rare, it does not make any of her basic needs any less crucial.

I advocate for Rowan’s health care because the health of my child means absolutely everything to me. I have seen my child dealing with what would be many parent’s worst nightmare.

I advocate for her health because it is my duty as her Mom to make sure she’s able to live the healthiest and happiest life possible.

Rowan was diagnosed with recessive dystrophic epidermolysis bullosa as a newborn, which means that she is missing the “glue” that holds her skin to her body. The surface of her body can blister and shear off leaving wounds like second-degree burns, so Rowan must be bandaged from the neck down to cover wounds and prevent infection. Dressing Rowan in clothes throughout her life has been a challenge as she could only wear certain types of clothes or shoes. Swimming in the pool and bathing means many hours of painful wound care for Rowan.

Thankfully, Dell Children’s Medical Center has cared for Rowan since she was born. Because epidermolysis bullosa is a progressive disorder, Rowan's condition has continued to require more symptom management and care as she’s gotten older. Rowan has been treated for esophageal blistering that was obstructing her airway, sepsis, and painful wounds. She has also been under sedation for bandage changes to lessen her anxiety.

Medicaid has made key services available to Rowan including nursing care, respite care, and coverage for life-saving bandages and medications. Some insurance companies do not cover these specialized bandages at all, which is why Medicaid is so vital to Rowan’s care. Without access to the dressings, her skin would constantly shear off with nothing to keep her open wounds from sticking to her clothes. It’s also incredibly important that we have nursing care as wound care is a two-person task. As Rowan takes between 10-15 medications per day to manage pain and control chronic health issues, Medicaid makes it possible for us to give her all the medications she needs.

Without Medicaid we wouldn’t be able to care for our daughter. There is no way! We wouldn’t be able to afford the cost of copays for her doctor visits. Rowan’s bandages alone cost around $10,000 a month. Simply, kids like Rowan are able to live with less pain and suffering thanks to the key services made available by Medicaid.


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