EB Awareness Week 2013

Somebody once said that even though EB is rare, each child suffers enough for an entire village. It’s true. There are other conditions, even more rare than EB that get more funding, more attention, more care, while many EB families, dealing with children that suffer immensely, fall through the cracks.

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Can you help?

What you can do is very easy.
See this picture on the right? Click on it and it will take you to the official Facebook post. All I am asking to do is to ‘like’ and ‘share’ it with your friends, in the hope that one of your friends, or you friends’ friends might be willing to either donate for a cure or perhaps might know someone that can help make a difference for these children.

The two organizations that I am asking to donate to are:

Debrahttp://www.debra.org/
EBMRFhttp://www.ebkids.org/

Debra (Dystrophic Epidermolysis Bullosa Research Association) supports the families, provides information, and donates funds to people in the research field.

The EBMRF (Epidermolysis Bullosa Medical Research Foundation) is strictly raising funds to donate to research for a cure.

If you live outside the United States and would like to help, I humbly suggest Debra International at http://www.debra-international.org/homepage.html. They have chapters all over the world. You may choose your country and a link to your local Debra chapters and info will be displayed. If there isn’t one in your country, choose a nearby country or contact Debra International directly.

Thank you for your support and, together, let’s make EB disappear!

Mom to 3 boys, 1 in heaven, 2 on earth. My first son Alex (whose demise is most likely EB related) was stillborn at full term. After a miscarriage, I had my second son Nicky, who has the Recessive Dystrophic form of Epidermolysis Bullosa. My youngest son, Connor, is 100% healthy, and I never, ever take it for granted. I am an author, photographer, graphic artist, webmaster, blogger and more.

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EB Awareness Week

I posted this on my blog last year to commemorate EB Awareness Week. These feelings haven’t changed, Nicky is just one year older, he will turn 16 on November 25th. 

If you know an EB mom and if you do NOTHING else for this EB Awareness week, give her some kindness today.

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The last week of October marks ‘EB Awareness Week’. It is a time to increase awareness of EB, to promote the need for a cure, and to spur advocacy on behalf of families suffering with the emotional, financial and physical burden of the disorder.

EB might be rare, there are approximately 600 patients with the same form of EB that my son has in the United States (which is the Recessive Dystrophic form), but its rarity should not deter people from helping in any way they can, even if the only thing they can do is send a tweet or post something on their Facebook wall with a link to one of the main organizations that are looking for a cure, such as Debra (http://www.debra.org/) or the EBMRF (http://ebkids.org/). After all, EB was ranked as one of the ‘worse’ disorders in the world, making the top 10 ‘Hell on Earth’ on a survey done by a major University in the 1990s.

The description of EB being devastating emotionally, physically and financially is probably hard to comprehend for the general population. I never heard of the disorder until my son Nicky was born, and when he started blistering extensively the Doctors told me it was apparent my first baby, Alex, who was stillborn at full term and was peeling skin in a way I had never seen, had EB as well and was most likely the cause of his demise. The years that followed I would find out on my own how a diagnose can completely ruin you financially (and we never went without insurance, mind you!), ruin you emotionally, and the physical ramifications of having EB, meant my son would have a life full of Doctors, pain, hospitals and hardship.

Unless you’ve walked in my shoes, I don’t expect you to understand at all.
I don’t expect anyone to understand the pain in my heart when my son screams and cries in pain or frustration, or when he tells me how tired he is of not being able to do anything, or how tired he is of changing bandages every day, of having pain every day. The pain in his eyes sometimes it’s almost too much to bear.
I don’t expect anyone to understand how much anger I swallowed when, over and over again, the various insurance companies denied care, denied supplies, denied surgeries, denied referrals, while I watched children with EB in other modern countries get what they needed, while I, who lived in supposedly the most advanced and modern country in the world, was forced to declare bankruptcy just to take care of my child.

Nicky & Alex - 1997

Nicky & Alex – 1997

I don’t expect anyone to understand what a toll on your emotions and what having a very sick child for 15 years does to your soul. Another mom said today that  EB moms have a reputation of being a little neurotic. We all can laugh at that one. But after having to watch your child from birth go thru pain and dysfiguring lesions who can blame us. We just put one foot in front of the other, one day at a time, that’s how we survive.

If you know an EB mom, if you do NOTHING else for this EB Awareness week, give her some kindness today. You may never know how much she appreciates people recognizing her emotional pain or all the work she does for her child and her family.

I Love you Nicky & Alex!
~Your Mommy~

Mom to 3 boys, 1 in heaven, 2 on earth. My first son Alex (whose demise is most likely EB related) was stillborn at full term. After a miscarriage, I had my second son Nicky, who has the Recessive Dystrophic form of Epidermolysis Bullosa. My youngest son, Connor, is 100% healthy, and I never, ever take it for granted. I am an author, photographer, graphic artist, webmaster, blogger and more.

Facebook Twitter Google+ Flickr YouTube