EB Awareness Week 2016 Day 3

14670669_441459689357954_5226005898682782182_nBandages: Kiira is still using bandages donated 2 years ago by many of you (and still have plenty of most things). We cannot express our appreciation adequately in words. Our insurance still doesn’t cover them and they can cost thousands of dollars a month. When Kiira was born 2 years ago, I was so stressed about providing her with what she needs to reduce wounds and infections, but God used a number of people who came to Kiira’s aid and subdued my worries for over 2 years! We learned how to reduce waste and reuse bandages when we can, but I felt like we witnessed a miracle of never-ending supplies. We have even sent some overseas to help others in need of bandages, because unfortunately not everyone has those resources. Without a cure, bandaging the skin is the only protection we can provide to those with EB. Several organizations and fundraisers rise up to help support those families, like debra.org and IrefuseEB.org, but many families still have to do fundraising on their own to cover supplies, copays, lost wages due to so much time off to care for a child with EB, special clothing, and so much more.

Thank you for blessing us. It helped Kiira be as healthy as possible and relieved so much stress for our family. Thank you!
#EBAwarenessWeek. #WeFightEB

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