So this is my friend Cassie. I hang out with her every Sunday; we play with Monster High dolls and watch movies and go to anime conventions together. Cassie is sweet and adorable and badass.
Cassie also has a condition known as Epidermolysis Bullosa, or EB, the same condition suffered by Jonny Kennedy, in the documentary The Boy Whose Skin Fell Off. EB is a rare genetic condition wherein your skin lacks essential proteins, causing it to be so fragile that the slightest friction can create severe blistering, inside and outside the body. Doctors compare it to living with 3rd degree burns that never heal. Cassie undergoes agonizing head-to-toe bandage changes thrice weekly, and has a GI tube installed because she often gets blisters in her throat that make it very difficult to swallow.
I tell a lot of people about Cassie, because I adore her, but something I don’t talk about often is the fact that at 15, Cassie has made the very adult decision that she doesn’t want to fight her condition anymore. The type of EB that Cassie has (Recessive) is an ultimately fatal one; sufferers rarely live past their 20s, felled by infection or cancer. Cassie has entered hospice care, which means that if a really bad infection sets in, as they have in the past, she has requested no lifesaving measures be taken. Cassie is being raised by a single parent who not only looks after Cassie alone, but also has adopted a second child, Walt, with a non-lethal form of EB. Imagine having that conversation with your kid; imagine hearing her say that she wants to die.
…I don’t have words for this, guys. I’m gonna lose my friend, statistically sooner rather than later.
And because this condition is so rare, Logan has to fight tooth and nail to get essential services and supplies from Medicare. Things like bandages, medicated gel to soothe her constantly-worsening and reappearing blisters, little things like that. Rather than being able to cherish the remaining time with his kid, Logan has to argue with bureaucrats about whether or not his dying child really NEEDS that extra medication. Again, guys. No words.
Anyway, this being National EB Awareness Week, maybe spare a minute to think of kids like Cassie who suffer from this, the worst disease you’ve never heard of. And maybe donate to Cassie through her Caring for Cassie page, or to the main EB charity, DEBra. Every little bit helps.