EB - The Worst Disease You Never Heard Of.
Epidermolysis Bullosa (EB) is a rare genetic disorder
that is painful and can lead to disability, disfigurement & early death.
There is no cure or treatment today. EB makes the skin so fragile that the
slightest friction causes blisters and skin tears. The eyes, mouth, throat and
other internal organs are also affected. Click here to learn more.
This disease has taken too many babies, and in this past year alone, it has taken Tripp, Bella, Chloe, and too many others to name. it's the most heartbreaking disease, and I can't imagine how any parent can live through this. Imagine your kids, and their ability to run, eat, play, sleep, take a bath, cry, fall down and get a scrape, talk to you, laugh etc. Now imagine that any of those things could take your child away from you, or that because of EB, you might not ever hear what your baby's cry, or laughter or hear them say "Mom" or "Dad", ever. Imagine the slightest brush of skin would cause blisters and infections and could literally kill your child.
My friend Christie is one the most amazing people you would ever want to meet. She dedicates so much of her time, energy, love and more to each of these families, and many, many more to help find a cure for EB. Christiem myself and Team Puck will be raising money to help find a cure for this disease. Right now, trial procedures are being done at the U of M in Minnesota, and the hopes are that one day bone marrow from a person without EB can help a baby or child with EB re-grow new skin that isn't affected by this disease. We need more money to fund more research.
I ask you to PLEASE go to my page Donate please and donate anything you can. With the help of a grant EVERY dollar you donate will be matched!!! If you donate just $5.00, that will give Team Puck $10.00! It's a win-win.
Please feel free to share, link, email, copy, etc. THIS POST to all of your friends.
Thank you so much, for taking the time to read this, and please, please donate.
This disease has taken too many babies, and in this past year alone, it has taken Tripp, Bella, Chloe, and too many others to name. it's the most heartbreaking disease, and I can't imagine how any parent can live through this. Imagine your kids, and their ability to run, eat, play, sleep, take a bath, cry, fall down and get a scrape, talk to you, laugh etc. Now imagine that any of those things could take your child away from you, or that because of EB, you might not ever hear what your baby's cry, or laughter or hear them say "Mom" or "Dad", ever. Imagine the slightest brush of skin would cause blisters and infections and could literally kill your child.
My friend Christie is one the most amazing people you would ever want to meet. She dedicates so much of her time, energy, love and more to each of these families, and many, many more to help find a cure for EB. Christiem myself and Team Puck will be raising money to help find a cure for this disease. Right now, trial procedures are being done at the U of M in Minnesota, and the hopes are that one day bone marrow from a person without EB can help a baby or child with EB re-grow new skin that isn't affected by this disease. We need more money to fund more research.
I ask you to PLEASE go to my page Donate please and donate anything you can. With the help of a grant EVERY dollar you donate will be matched!!! If you donate just $5.00, that will give Team Puck $10.00! It's a win-win.
Please feel free to share, link, email, copy, etc. THIS POST to all of your friends.
Thank you so much, for taking the time to read this, and please, please donate.
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