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Monday, June 9, 2008

Miracle Monday

It's Miracle Monday so let's get right to it....

In June of 2005 , I watched a documentary on TLC called, "The Boy Whose Skin Fell Off".

It was the story of Jonny Kennedy. Jonny was a 36 year old from the UK who suffered from dystrophic epidermolysis bullosa, which meant that his skin literally fell off at the slightest touch, leaving his body covered in agonizing sores and leading to his final fight against terminal skin cancer.

This documentary left me changed. I was not able to put it out of my mind. Nothing I had ever seen on TV had touched me like this.

I had never heard of this disease until I saw this documentary and I was horrified by it. This man lived 36 years in agony. He was born with no skin on his left leg. He was in pain virtually all of his life. I could not even begin to imagine how hard every day of his life was for him.

His mother spent 36 years taking care of him, redressing his bandages daily as he screamed out in pain. As a mother, I could not imagine how hard that must have been for her.

Yet this man (who looked like a frail little boy covered in scars) did not let his pain stop him. He started DebRA, a charity to raise money to promote awareness for and to find a cure for ED.

Right after he was diagnosed with skin cancer, he decided he wanted to do a documentary on his disease to help others better understand it. And that's how "The Boy Whose Skin Fell Off" was born.

I watched this show and cried through the whole thing. I felt horrible for this man and the pain he suffered as well as for the estimated 1 in every 50,000 children born with some form of it.

And for months and months after I saw this show, I thought about this disease and I prayed. I prayed for all the people suffering from this and I prayed for a cure.

I didn't know what else to do. So I enjoyed my healthy children. I watched them growing up with no pain and no suffering and all I could do for these other children that weren't so lucky was pray.

Yesterday, as as I sat at my breakfast table reading the newspaper, I saw this article.

It was a short article but it made me rejoice! A little boy from Minneapolis has been TREATED and CURED of this disease using stem cells from umbilical cord blood and bone marrow.


If that's not a miracle, I don't know what is!

And I am sure that Jonny Kennedy is celebrating with the angels right now!

If you are going to participate in Miracle Monday this week, it's simple. Just post a miracle on your blog and link it back here using Mr. Linky below. Please mention "A Mom's Life" and my URL in your post. And if you want, you can use the Miracle Monday button in your post as well.

PLEASE NOTE - when linking make sure to link to your Miracle Monday post. Do not link to the front page of your blog. It is important that you link to the Miracle Monday post so that when others are reading your miracle in the future, the link will take them directly to your miracle and not to the front of your blog.For an explanation on how to do this, please check here. Or, you can always email me and I will be glad to help you. My email address is in my profile.

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This edition of Miracle Monday is now closed. If you have a miracle you would like to share, please come back next Monday!


Texasholly said...

That is such an emotional story. The cure is certainly a miracle.

I am so blessed.

Tracy said...

I saw that same show about Johnny. It was so incredibly sad. Glad to hear someone else does not have to suffer like he did.

Unknown said...

Beth - that is a neat story (found you by the way through CWO). I have linked my miracle. It happened 6 months ago today! :)

Melissa said...

oh how sad and amazing. I couldn't imagine having a child with that kind of pain and problems. That would be so hard to watch

Unknown said...

That is truly awesome, what a story!!!

Christina said...

Wow how amazing. I read your's first, as usual forgot about Miracle Monday, and then posted one that I was inspired to post after reading yours. Of course I probably linked incorrectly and still have not got anything in my sidebar, but I am working on it.

Shirley Mary said...

What a story! One of the things that really impressed me was the constructive way that Jonny handled his pain. He did not have "tunnel vision" but rather wanted to reach out and do what ever he could to eliminate the suffering of others and find a cure for ED.

I trust that more and more people will find "Miracle Monday." And with God placing this on your heart, He knows how to make connections. Because I'm one of them!


Juliet Fieldew said...

Hi Beth! Thanks for leaving a comment on my blog, and leading me to yours! I just find it is a wonderful witness that you, even though you have an illness you have to struggle with, are looking outside of yourself and caring about people worse off than yourself... thank you for your great attitude, I will be back... especially when I'm feeling blue and navel gazing too much! God bless!

Jaina said...

What an incredible story. Thanks so much for sharing!