Marky’s Story
Hi, I’m Joni and I sure wish I could show you this video right now, but that’s pretty hard to do over the radio.
Welcome to Joni and Friends. Like you, I’m always inspired by uplifting stories of people who courageously face insurmountable odds. You know, people whose physical hardships are almost impossible to imagine. But when it is a child’s story, well that really ups the inspiration, doesn’t it? And it’s how I felt when I saw this video about a little boy named Marky. Perhaps you’ve seen it. If not, I’m posting the link on my Facebook and radio page today because I really want you to watch it. You’ve got to be inspired by this kid’s testimony. You’ve got to learn from it, and then share it with your friends. Especially if that friend is going through some physical pain or hardships.
You see, Marky is on the cusp of just being a teenager and he’s got this condition called Epidermolysis Bullosa or EB. It’s a rare connective tissue disorder that affects one out of every 20,000 births in the U.S. Now here it is. This is what it’s all about: Most people have seven layers to their skin, but Marky with his EB, has only one layer of extremely fragile skin. The skin on his arms and back and legs is constantly blistering and tearing, just from the slightest degree of friction. It’s why Marky is known as the boy with butterfly skin. It’s a nickname for his condition because Marky’s skin is as fragile as the wing of a butterfly. There is no cure and no treatment. The only thing Marky’s parents can do is to keep bandaging his wounds. Epidermolysis Bullosa is always painful and very debilitating. People who have butterfly skin don’t live very long. In fact, Marky’s older brother Carlos passed away from the same condition in 2013.
Now, Marky’s mother and father have been through quite an ordeal, but even they are hugely blessed by their son’s attitude. Marky is only a kid, but he has such wisdom for a child his age. He knows he’s in a battle for his life, and he tells his parents all the time that it wasn’t just at the beginning God breathed life into him; he says that God breathes the breath of life into him every day. Even the family pastor says, “Here you have this little guy with this disease and he’s been in pain since the day he took his first breath, and the kid never complains. I’ve never heard that boy complain.”
Marky has one particular worship song that he loves singing over and over, and you get to hear it when you watch the video. The song is called “Resurrecting,” and listen to these words.
“The head that once was crowned with thorns,
Is crowned with glory now.
The Savior knelt to wash our feet,
Now at His feet we bow.
The fear that held us now gives way
To Him who is our peace.
His final breath upon the cross
Is now alive in me.
The tomb where soldiers watched in vain
Was borrowed for three days,
His body there would not remain,
Our God has robbed the grave.
(And here’s the chorus. This is Marky’s favorite part):
By Your spirit I will rise
From the ashes of defeat,
The resurrected King
Is resurrecting me.
In Your name I come alive
To declare Your victory.
The resurrected king
Is resurrecting me.”
Marky sings it over and over again, and it proves that he is not afraid of death. And you can see it for yourself. You can see it in his face. So please visit joniandfriends.org/radio today and take a minute to watch this kid’s story. Oh, and while you’re there, don’t forget to pick up your free copy of “Breaking the Bonds of Fear.” Marky, by God’s grace, is doing it and you can too.
© Joni and Friends
