After eight days in the hospital in and out of the NICU for wound care, and a slew of tests and specialists, Rowan was diagnosed with Recessive Dystrophic Epidermolysis Bullosa (RDEB), a chronic, debilitating, and sometimes fatal genetic disorder. For more information, please see below, or visit www.debra.org.
We are very fortunate that Rowan's doctor is familiar with this disorder so he is getting excellent tailored care. However, his daily wound care supplies and specialty items (like extra-soft clothing, adaptive cushioning, nutritional supplements, etc.) are not covered by health insurance. Any assistance in providing for his care would be greatly appreciated. If you would prefer to gift an actual item, we have also set up an Amazon.com Wishlist: http://a.co/dvNiJzw
Thank you from the bottom of our hearts!
~Kendra & Craig Millner
Epidermolysis Bullosa: EB is a rare genetic connective tissue disorder in which children do not produce a vital protein to allow their skin to adhere to itself. There are several subsets of EB, ranging from relatively mild to severe. 1 out of every 20,000 births in the United States are affected by some form of the disease, and 1 out of every 1,000,000 is diagnosed with RDEB. Children with EB are often referred to as "Butterfly Children" because their skin is extremely fragile and can blister or tear from any friction, even something as gentle as skin-to-skin contact. Internal organs can also be seriously affected by the disease, and nutrition is critical as feeding can be hampered by blisters in the mouth and throat (often necessitating a GI-feeding tube). EB is painful, debilitating, and is in some cases lethal. Children with severe forms of EB are often wheelchair bound as walking is too painful, and some can develop clubbed hands and feet due to fused tissue after repetitive blistering. There is no treatment or cure, though there are some experimental treaments in clinical trials. Daily wound care, pain management, and protective bandaging are currently the only options available, and costs for specialty supplies can run up to $5K-$10K/month.
- Heather Rishel
- Leslie Lane
- Seth Doolittle
- Ed Lampe
- Josh Helmer
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