When life handed me a Canadian Husband, Two Energetic Kids and a Dog with ADHD,
I made myself some Organized Chaos!

Thursday, November 29, 2012

The Butterfly Children

For the last month or so I have been following a facebook page of a family that has been going through something I can’t even wrap my mind around.  Here is the link of the page so you can check it out yourself.  http://www.facebook.com/SupportBabyEastonFriedel.  I do want to warn you the pictures on here are hard to see.  If you have a weak stomach at all please just read this blog. 

Here is a little bit of his story!  Easton was born August 23, 2012 with a rare disease called Epidermolysis Bullosa or EB.  Children with this disease are also known as butterfly children.  You will understand that the more you read. 

Wikipedia Definition:  Epidermolysis bullosa (EB) is an inherited connective tissue disease causing blisters in the skin and mucosal membranes, with an incidence of 1/50,000. Its severity ranges from mild to lethal. It is caused by a mutation in the integrin α6β4 cell adhesion molecule on either the alpha or beta subunit.  As a result, the skin is extremely fragile. Minor mechanical friction or trauma will separate the layers of the skin and form blisters. People with this condition have an increased risk of cancers of the skin, and many will eventually be diagnosed with it as a complication of the chronic damage done to the skin.

These children are called Butterfly Children because their skin is as delicate as a butterfly’s wing.  Easton has been in the hospital till just recently.  He is covered with DEEP, RED, OPEN wounds!  I feel horrible because I cringe seeing the pictures of him.  The pain this baby endures in unimaginable.  Then I think of his family.  The strength and courage they go through to just make it day to day.  Learning to change baby Easton’s dressings, cleaning him, managing his pain and all the extra daily duties they have had to learn because of this horrible disease.  I just remember seeing my little one fall and hurt himself for the first time and needing stitches how much my stomach and heart ached for him.  To have the strength and faith daily to be this baby’s strength is AMAZING to me! 

Easton has three brothers that have been through this ride with Easton.  These little boys have put on a brave face for their mom, dad and baby brother.  It is truly amazing to see how this family has taken to this disease and they won’t let it beat them. 

EB is HORRIBLE but on top of the pain both emotional and physical but that isn’t all.  This family is going to have to have to protect this child’s skin and that takes money.  EB patient’s medical supplies are over $10,000 a month.  Insurance pays for about $1,500 of it.   
As I type this I am also pleading to God for them to have a slight relief.  Being all home in one house is a huge relief but more relief and for God to bring peace in their hearts.  To bring relief to this little baby and to educate others on this disease so someone can find a cure.  May God bless this family with love and comfort.  

If you want to help children just like Easton you can go to http://thebutterflyfund.org/ and donate. There is also a way to donate on their facebook page.  But my number one request for this family and others going through the same thing, PRAY!  Pray hard, Pray Long, Pray Often!