Butterfly Bucks
Donation protected
My daughter has Recessive Dystrophic Epidermolysis Bullosa (RDEB). RDEB is a genetically inherited skin disease resulting in a skin-protein defect that causes blistering, scarring from repeated blistering, and contractures. These patients are at a greater risk for skin cancer over the course of their lifetime. Any trauma or friction to Kendall's extremely fragile skin results in blisters formation. This could be from a hug, touch, sitting at a school desk, sleeping in bed, or a fall.
As a result of RDEB, Kendall's wounds do not heal in a typical manner. The skin is missing the critical proteins which lead to normal healing. It is very common for a particular wound to be present for months at a time, as it may heal very slowly, or it might not heal at all. As one wound heals, another develops - this occurs daily. On any given day, a patient may have 10 wounds, then the next day 30 wounds. Some of these wounds may heal very slowly, or it might not heal at all. Quantities will not be consistent from one dressing change to another. Improper dressing application and care of wounds predisposes Kendall to infection and sepsis which could lead to hospitalization, serious illness or death.
Kendall currently uses a wound supply company that specializes in providing specific wound care supplies for patients that have been diagnosed with RDEB. Her current supply list was denied by Indiana Medicaid as of September 2015. She needs bandage changes every other day. The out of pocket costs of these bandages are $12-14 thousand a MONTH. We are starting this Go Fund Me page to help fund the costs of Kendall's bandages and a lawyer to help overturn the Medicaid ruling.
Any donations are sincerely appreciated. Thank you!
As a result of RDEB, Kendall's wounds do not heal in a typical manner. The skin is missing the critical proteins which lead to normal healing. It is very common for a particular wound to be present for months at a time, as it may heal very slowly, or it might not heal at all. As one wound heals, another develops - this occurs daily. On any given day, a patient may have 10 wounds, then the next day 30 wounds. Some of these wounds may heal very slowly, or it might not heal at all. Quantities will not be consistent from one dressing change to another. Improper dressing application and care of wounds predisposes Kendall to infection and sepsis which could lead to hospitalization, serious illness or death.
Kendall currently uses a wound supply company that specializes in providing specific wound care supplies for patients that have been diagnosed with RDEB. Her current supply list was denied by Indiana Medicaid as of September 2015. She needs bandage changes every other day. The out of pocket costs of these bandages are $12-14 thousand a MONTH. We are starting this Go Fund Me page to help fund the costs of Kendall's bandages and a lawyer to help overturn the Medicaid ruling.
Any donations are sincerely appreciated. Thank you!
Organizer
Amy Stiller Bailey
Organizer
Floyds Knobs, IN
