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<\/a><\/p>\n\u201cI don\u2019t think they get it,\u201d Kiira\u2019s dad, Jason, tells KCRA about the older girls. (Yahoo Parenting was unable to reach the Kinkles for comment.) \u201cEvery night they pray that her \u2018owies\u2019 go away, but I don\u2019t think they understand the severity of it.\u201d<\/p>\n
Kirsti explains that the only way to pick Kiira up is with a soft blanket wrapped around her as a protective barrier.<\/p>\n
She and Jason must also spend one to two hours a day individually bandaging their baby\u2019s fingers and toes to protect them from rubbing against each other.<\/p>\n
A fund has been set up to assist the family with ongoing medical expenses, because while the Kinkles have medical insurance, but it does not cover the estimated $10,000 to $20,000 yearly cost of the daily at-home treatments.<\/p>\n
\u201cThey say it\u2019s the worst disease you never heard of,\u201d Kirsti says, quoting a tagline of DEBRA, the Dystrophic Epidermolysis Bullosa Research Association of America, which is dedicated to fundraising for research in the aim of finding a cure.<\/p>\n
The organization\u2019s executive director Brett Kopelan, of New York City, says the phrase popped into his head when his 7-year-old daughter, Rafi, was born with the disorder, and he began researching the prognosis online.<\/p>\n
\u201cA little piece of your heart kind of breaks every day,\u201d Kopelan tells Yahoo Parenting, explaining how he must watch Rafi endure the daily excruciating pain that comes with bathing her blisters and wounds. \u201cIt\u2019s hard. It\u2019s really hard to inflict pain on your child every day. This disease is about pain.\u201d<\/p>\n
Though it\u2019s fragile skin that\u2019s the most visible part of the disease, Kopelan explains, EB is actually a connective-tissue disorder, caused by the body not producing any collagen-7, which is the sticky protein that holds together our two layers of skin.<\/p>\n
Without that protein, friction causes skin to easily tear or blister, and Kopelan says his daughter must be wrapped chin to toes in bandages at a cost of $32,000 a month (thankfully covered by the family\u2019s insurance, although not by most), and travel to school in a motorized wheelchair \u201cbecause sneakers would tear her feet apart.\u201d<\/p>\n
She also takes several pain medications, including methadone and Neurontin.<\/p>\n