Madisyn's rare painful skin disease

Madisyn is a 17 year old beautiful girl who was born with a rare skin condition called, "Epidermolysis Bullosa" or EB. There is no cure and everyday is a struggle for her. Her Mom is her "rock" and always there for her. She has Home Care Nurses who care for her as well. She eats very little and requires nightly liquid feedings through a tube that goes into her stomach. She has painful blisters and skin tears all over her body and blisters internally as well. Most people enjoy a nice hot bath, but for Madisyn , that is not the case. Her bath takes about 3 hours. First, all bandages must come off slowly and require adhesive remover because they stick to her skin, she then soaks in a bathtub with clorox bleach added to the water to minimize infection, then, all wounds are cared for with medicated ointments and various bandage materials. She is on daily heavy duty pain medication, frequent antibiotics and numerous other medications. Madisyn is often nautious, tired and in constant pain! She spends a lot of time at numerous Dr. appointments which are over an hour drive and are exhausting for her. She can walk short distances, but uses a wheelchair for longer distances. She is an inspiration to many because with everything she goes through, she has a loving, caring, upbeat spirit! We are raising money so that Madisyn and her family can attend a beneficial conference about her rare condition in which many physicians, wound care specialists, researchers, etc. will be presenting. The conference is out of state and costly to attend. We are also raising money to help with expenses that are not covered by insurance, but are needed to care for Madisyn. Thank you for taking the time to read this and for any contribution you make to help Madisyn!
www.debra.org