How an EB Bucket List Can Get You Your Heart’s Desire

Maybe we should chart our own course in life like one sweet baby girl who was born with a rare skin disease called Epidermolysis Bullosa. Little Joella lives with the worst disease you probably never heard of.

Epidermolysis Bullosa (EB) is a rare genetic connective tissue disorder that affects one out of every 20,000 births in the United States (approximately 200 children a year are born with EB).

The gut-wrenching part is there is no treatment or cure for Epidermolysis Bullosa (EB).

There are many genetic and symptomatic variations of EB, but all share the prominent symptom of extremely fragile skin that blisters and tears from minor friction or trauma. Internal organs and bodily systems can also be seriously affected by the disease.

EB is always painful, often pervasive and debilitating, and is in some cases lethal before the age of 30. And that’s why the Team Joella blog and her family’s bucket list is a wonderful reminder to live life to its fullest.

Wait or Create

Generally, when people think of a “bucket list,” they think of all the things that they want to do or experience throughout their entire life, before they proverbially, “Kick the bucket.”

While I highly encourage you to create your own bucket list, I’d like to also encourage you to set goals to experience and accomplish on a smaller scale. Focus on experiencing something every day, every week, every month and every year.

We cannot wait for the right moment to experience life. We have to create the right moments and experience life.

As you create your bucket list, be sure to make your family your top priority. You can have all the experiences the world has to offer, but if you don’t get to share them with those closest to you, they will be empty.


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