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Tatum EB Hope

What is EB? EB stands for Epidermolysis Bullosa – a very rare genetic disease. The disease causes one’s skin to be extremely fragile and blisters easily to the slightest rub or touch. An estimated 50 in 1 million newborns are diagnosed with EB. Most children with this disease do not survive into adulthood. There is no cure for this disease.

A special little girl named Tatum Blackwell suffers from this extremely rare disease. She deals with blisters, tears, scars and various other injuries everyday. Unfortunately, it is not only through contact that her skin can blister; extremely hot conditions can also cause the skin to tear.

Not many people know about this disease. I know I had no clue until I met a new friend this summer. Although the disease is horrible, what’s worse is that the necessities that are required to deal with the scars and blisters are not covered by OHIP (Ontario Health Insurance Plan).

That is why her friends and family are attempting to create an EB Awareness Week in Canada through Tatum’s Walk for Hope! The U.S.A. already has an awareness week – yet Canada does not. This week occurs during October 25-31.The purpose of this week is to create awareness of EB, and let people know what it is and attempt to find a cure for it.

For more information on Epidermolysis Bullosa, check out the following website:

http://emedicine.medscape.com/article/1062939-overview

To help with EB Awareness and find out more about Tatum Blackwell, visit this site:

http://www.tatumebhope.org/

Let us all work together in letting everyone know about EB – and find a cure for it!

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  1. October 6, 2009 at 11:08 AM

    Thank you so much for writing about EB in your blog! I hope that everyone who reads this will sahre it with at least one person. The more awareness that we spread, the closer my little girl will be to a cure. Sincerely, Natalie…EB Mom

  2. Michelle Boyacigil
    October 6, 2009 at 11:31 PM

    Thank You so much for creating such a wonderfully put together blog. Tatum and her wonderfully inspiring parents Natalie and Chris are our neighbors and we all love them very much, and Tatum has found a very special place in all of our hearts.

    It is easy to see that hearing about her has inspired you to write about it. Our only wish that enough people hear about this disease and are as equally inspired to do something like this.

    I know that the friend you mention is Adriana, someone who I am also grateful to call a friend, and someone who has spent many hours caring for Tatum and creating videos to spread the awareness as well as working alongside Natalie on the website and annual walks for EB.

    Your wonderful words have inspired me all over again, and I am now in the process of sending word out to the local schools to gather more people and sponsorship for the walk for Tatum. If there are any interested people in the area that would like to come out and join us for the walk, please visit http://www.tatumebhope.org/ for the information and sponsor sheets.

    Thank you again for your help in spreading awareness of E.B. and re-inspiring those of us who know this little Butterfly Angel in person.

    Michelle Boyacigil

  3. October 7, 2009 at 12:28 AM

    I’ve never met Tatum, but I love her already. She’s an inspiring little girl to smile confidently in every picture that I have seen. I had never heard of this disease before, and I’m glad I now know that it exists. I really do hope that the word goes out and others realize what kind of painful disease exists.
    I am part of the Residence Council here at Laurier Brantford. And I hope I can get the crew together and create awareness of EB here – the more the better!

  4. Adriana Little
    October 7, 2009 at 1:39 PM

    Tatum is so important to me, as I’m sure you know, and it means the world to me that you wrote about her on your blog. Anything you need help with to get more people involved in residence etc, let me know what I can do. Whether it’s writing out one of our many letters to give the council, or simply educating people. It’d be really cool to do something like that relay for life team and have an event for EB. HEY! There’s an idea…

    Like Natalie said, the more awareness, the closer we are to finding a cure.

    I can’t help but think how blessed I am that EB has touched my life in such a profound way. And I won’t stop spreading awareness until there is a cure so that Tatum (and all the other EB butterfly children) can enjoy long, happy, pain-free lives.

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