Thursday, January 5, 2012

Happy New Year!

Let me introduce (future) Dr AJ Fischer, 
specializing in the treatment that cures EB
(wouldn't that be cool?)

What a great year God has given us with AJ.  We look forward to see what he has planned for us this year.

One event we are hoping to attend is the DEBRA Patient Care Conference.  We are in the middle of winter, but we need to start planning for the conference scheduled for July.  The DEBRA conference is the largest EB conference in the United States.  The conference is held every two years and this year Orlando, Florida has been chosen as the site.   This will be our 3rd conference and as much as we are dreading the heat of Florida (AJ’s skin does poorly in heat) we are very excited to attend.

DEBRA (Dystrophic Epidermolysis Bullosa Research Association) is the nonprofit organization that supports families and works to raise funds for research towards a cure for EB.  By attending the conference we will hear the latest research and medical advances from the top EB doctors in the world.  We will increase our knowledge about wound care and the medical interventions that our children with EB need to survive.  We will also network with other EB families. 

This is a picture with our friend Sara at the last EB conference in Ohio

The conference is the only time that AJ has the opportunity to play and connect with other children with his disorder.  Just this past weekend we took AJ to the local indoor play area at the mall.  We were there less than five minutes when he came over and asked to leave.  He looked sick but it wasn't a physical sickness that was the problem.  From the time he arrived every child and adult had turned to stare at him.  It was really sad to watch.  Children nearby were debating what accident must have caused him to look so terrible.  Sadly, we left.  This is AJ’s life; he will always look different and people will stare or turn away not wanting to look at his wounds, scars and bandages.  At the EB conference it is different.  Everywhere around us are children and young adults wrapped in bandages and marked with the scars of EB.  It’s like entering a new world.  Suddenly a sense of normalcy and acceptance are the reality.  I can’t describe the enjoyment of “fitting in” for AJ and for our family.

Our other "non EB" children also benefit from the friendships they make with other children with EB.

The barrier to our attendance is the cost.  Two years ago we drove to the conference in Ohio and we felt the total expense was reasonable.  Florida is more than twice the distance and we have determined that airfare is just too costly (unless of course a great deal comes along).  Our daughter Katie has agreed to attend the conference and help with AJ’s cares while away.  She also loves to drive cross country and has generously offered to help us make the trip.  

She took us safely to the Ohio conference

She even let us stop for ice cream.  This time we will have many more stops.  

It will be a long trip but it is so important for us to attend.  We are anticipating our total expenses to be $2350.  If we have enough funds we will consider the added cost of a rental vehicle instead of using our own.

I hate fundraising letters and wouldn’t ask for help unless it was incredibly important.  If you are able to help us with even a small amount towards our trip it would be so appreciated.  I can promise you that it will be an investment into AJ’s life. 

Please send donations to: 

Barbara Fischer
902 Beachwood Court NE
Stewartville, MN  55976 


You may use the PayPal button located 
on the right sidebar of the blog.

 Sorry we are not a tax deductable entity but we will happily send you pictures and an update after our trip.  

To the other EB families that read my blog; please disregard this post.  I hope to see you at the conference and  I am not requesting financial support from you.  You guys already provide support in so many other ways.

I'll close with a photo of AJ and his snowman.  It may be his only snowman this year as we are snowless here in MN! Strange.

Thanks again for hearing my request.  I know God hears our requests and this post is simply my way of letting others know of our need.

Philippians 4:5-7 (English Standard Version)
Let your reasonableness be known to everyone.  
The Lord is at hand; do not be anxious about anything, 
but in everything by prayer and supplication with thanksgiving 
let your requests be made known to God.  
And the peace of God, which surpasses all understanding, 
will guard your hearts and your minds in Christ Jesus.


Barbara and AJ  

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