Butterflies are fragile. Their wings shed light to beautiful colors and identical patterns, that leave you standing in awe at their beauty. These butterfly children aren’t remembered or praised for physical beauty, but rather the beauty in the strength they show, the beauty in their journey, and most importantly, the beauty in not letting an illness define who they are and limit the many things they want to do in life.

The butterfly children refer to those who suffer from Epidermolysis Bullosa (EB), an illness that causes the skin to be fragile. It is a severely painful and, unfortunately, an incurable and rare genetic skin disease. Skin can easily be injured, causing painful blisters to form and even more serious problems if the blisters become infected. Some cases are severe enough that life expectancy is extremely, and many die at an early age. Due to the fragility of their skin, they are commonly known as “butterfly children” because of the thinness and fragility of a butterfly’s wings.

To get even a glimpse of what these children go through every day, here is an inspiring story of a 14-year-old boy by the name of Jonathan Pitre, who continues to do what he loves, despite the obstacles that have stacked up against him.

As heartbreaking it is to witness the excruciating pain that these children have to go through, it’s important to raise awareness. It’s important for others to know that there are diseases out there that are incurable and it’s most important that others know so that they can pray. Please keep these children and their families in your thoughts and prayers at night. Pray that their next day will be better than the one before it, and be thankful that although you may have struggles and difficulties in your life, that you aren’t forgetting the trials and tribulations that others may have to go through.

If you feel inclined to contribute in any way possible whether that’s through donations, providing families with small gifts or a small getaway, or even prayers, I urge you to visit The Butterfly Fund page. Please continue to pray for these children and their families for they are some of the strongest people I have borne witness to.