My little family!

Monday, June 6, 2011

Epidermolysis Bullosa Awareness...

Last week I came across a blog from a girl, my age, that is from Ponchatula, LA.  She has a baby with a very rare disease that just makes this little sweet heart's life, just complete misery.  I am going to try to start collecting donations at work, and from friends of mine as well.  I am just drawn to this Young Mother's story about her baby boy Tripp.  He was given 1 year of life expectancy, and has lived for two.  He is still fighting for his every breath.  His disease is called Junctional Epidermolysis Bullosa, research it, because it is one that we, as parents need to become more familiar with. 
This terrible disease causes blisters, all over his body, to form any time there is the least bit of friction on his skin.  Blisters that are bubbles that have to be popped.  He has to wear special diapers because his little hinney can't stand normal diapers, his bum is completely raw, just open flesh.  Try taking a bath like that, much less with all of the other blisters all over his legs, stomach, feet, neck, face, head, ears, fingers, mouth throat, etc.  His little fingers dont' have nail beds, but instead has blisters where his nails should have been.  Can't eat becaue blisters consume his mouth completely - so the only other option was to put in a feeding tube, and shortly after a feeding tube was put in, he had to have a trach because his esaphagus was completely covered in blisters as well, and was causing him lack of breath. 
My point in bringing this up is not only to bring awareness to this terrible disease, but to try and raise some money for Courtney Roth and her baby boy Tripp.  My heart just goes out to them.  :o(  I know sometimes people aren't financially able to give, but when that situation arises, prayers are the best gift of all.  Plesae keep this family in your prayers.  Her blog will be listed below.  If you feel led to donate money to this family  you can send it to:
                              Courtney and Tripp Roth
                               PO Box 216
                               Ponchatoula, LA 70454

If you would like to mail me the the check instead so I can send all of the money in a lump sum make the checks payable to Courtney or Tripp Roth, so it can be deposited into his fund account, that helps support all of his medical bills that arise with JEB. 
E-mail me to get my address....
I am going to print flyers and hang a few at work, and maybe a couple at a few local stores as well.  I plan to contact her at the end of june and let her know what I have gathered to donate for her.  Every person that donates SOMETHING, I will send her a list of names so she personally knows who all wanted to help her precious baby boy. 


Here are a couple pictues to open your eyes to what this precious baby boy has to deal with every day of his little life!

Tripp 1 Month

Tripp 1 Year

Tripp Now

See what this horrible disease has done
to this poor baby???

Even if it is 5 dollars, that is better than him having nothing!  E-mail me on here, or you can message me on facebook.  Either way, she would be ever so appreciative!
Thank you, and may God pour out his blessing on this family!