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In most ways, Elodie Kubik is a typical 19-month-old. But Elodie, who has a rare skin condition known as epidermolysis bullosa, or EB for short, also faces challenges that most children her age don’t.
Epidermolysis bullosa causes Elodie’s skin to blister with the slightest contact.
EB is a genetic disorder causing blistering of the skin and mucous membranes and results from a lack of collagen VII, a critical protein that binds the layers of the skin together.
Without collagen VII, the skin shifts when it experiences friction during daily activities, causing blisters and wounds to form that may never heal. Internal injuries are also common.
For Elodie, this means bandage changes multiple times a day.
The average life expectancy for a patient with EB is just 30 years, according to a report on EB published in the Orphanet Journal of Rare Diseases.
A group of Emily Kubik’s close childhood friends want to change that. They have organized a polar plunge at the Hingham Bathing Beach March 3 to raise money for the EB Research Partnership, where Kubik is a board member. Donations on the group’s CrowdRise page have blown past the organizers’ original goal of $20,000. As of Feb. 21, nearly $90,000 has been donated, mostly from individuals.
Read the full article on epidermolysis bullosa by Julia Preszler at The Boston Globe