‘Untouchable Baby’—Parents Desperate For a Cure to Rare Genetic Disease

Kiira Kinkle, eight-months-old, was born with a rare genetic skin disorder that makes her practically untouchable. While most parents bond with their babies through cuddles and affection, Kiira’s parents, who live in Lincoln, Calif., cannot pick up or hold their daughter without the barrier of a soft blanket.

Her mother, Kirsti Kinkle, calls the condition, known as recessive dystrophic epidermolysis bullosa, “the worst disease you’ve never heard of,” according to KCRA-TV. The condition makes skin-to-skin contact impossible. Even the friction caused by a diaper or tag brushing her can cause her skin to tear off or blister. Unfortunately, there is no known cure—the family must work carefully to create methods of caring for Kiira without causing further injury.

The Kinkles must rely on blankets to lift her, as well as wrap her fingers, toes, hands, and feet in bandages every day to protect her. The process takes two hours each day. They say their medical insurance does not cover the cost of these at-home treatments. The lifespan for those who suffer from the condition can go to 30 years or more. Their lives, however, are fraught with constant discomfort and pain.

“I would never wish this on anybody, knowing she’s going to live a life of pain,” Kirsti said.

The Kinkles hope to raise awareness by sharing Kiira’s story, so that perhaps the disease can be further researched for a cure.

Check out other extremely rare and baffling medication conditions here, or scroll through a slideshow of some of them below.

Cutaneous Horns
Cutaneous Horns
Hypertrichosis aka “Werewolf Syndrome”
Hypertrichosis aka “Werewolf Syndrome”
Neurofibromatosis
Neurofibromatosis
Noma
Noma
Macrodactyly
Macrodactyly
Polyostotic Fibrous Dysplasia
Polyostotic Fibrous Dysplasia
Progeria
Progeria
Epidermodysplasia Verruciformis
Epidermodysplasia Verruciformis
Maggot Infestation
Maggot Infestation
Polymelia
Polymelia
Diprosopus
Diprosopus
Haemangioma
Haemangioma
Hidrocefalia
Hidrocefalia
Neurofibromatosis
Neurofibromatosis
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