Two weeks ago, I saw Jonathan Pitre’s story on Youtube. His suffering broke my heart and I’ve not been able to shake the images or sounds of his suffering. Jonathan suffers from Epidermolysis bullosa. It is a rare genetic disorder that causes the skin to be extremely fragile, blistering and tearing from the slightest friction or trauma. Children who suffer from this disorder are known as Butterfly Children because their skin is as fragile as a butterfly. And there is no known cure.
As followers of Messiah, I believe that the things that break His heart should break ours. And we are called to do something about it – starting with prayer.
So for the last two weeks I’ve been lifting up these children and asking God what I can do to make a difference? After all, I am only one person. But He reminded me that one person can make a difference, especially when that person lays it before His altar.
So the first thing I can do is pray. Pray for the children and young adults who suffer from this disease. Pray for their comfort, their healing, and pray for a cure. And I can encourage others to pray.
The second thing I can do I give. The families and the organizations need financial support – support for every day costs and support for research. While one person might not be able to give a fortune, every little bit helps. So I can give and encourage others to give.
The third thing I can do is make others aware. There are numerous videos on Youtube of these brave children and their families in their struggle to live with this disease. So I can watch these videos, as painful as it might be, and encourage others to do the same.
So please – watch these three videos, pray, give, and ask others to do the same. (The last video shows how you can help.)
John Hudson Dilgen:
EB Research Partnership: