Melissa Tharp takes care of her sons Marcos, 9, and Carlos, 10, who both suffer from a form of dystrophic epidermolysis bullosa, a rare genetic disorder in which the microscopic collagen fibers holding together layers of skin together don't work properly. For the boys, who will eventually die from the condition, the slightest touch or movement causes open sores and blisters. Children with their condition are often referred to as butterfly kids because their skin is as fragile as a butterfly's wing. I had the pleasure of visiting the family's home in Hutchinson earlier this month and the story was just published over the weekend, hence the delay. Read the story here.
Thanks for looking,
Pat
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