Awareness and Loved Ones

This post is NOT about my favorite things. It is not about happy things. It is not about pretty things. It's about disease awareness. Don't get me wrong, the two children I mention in this post are pretty...heck...they're beautiful, however the diseases they have are not pretty. They're challenging. They're heartbreaking. They're brutal. The best part though? These kids not only grin and bear it, but they live life to the fullest. Their little hearts burst with love and their lives are filled with happiness due to their lovely support systems and families. The two diseases that reach close to home and to my heart are OI and EB. 

Source

"Osteogenesis imperfecta (OI and sometimes known as brittle bone disease, or "Lobstein syndrome"[1]) is a genetic bone disorder. People with OI are born with defective connective tissue, or without the ability to make it, usually because of a deficiency of Type-I collagen." (http://en.wikipedia.org/wiki/Osteogenesis_imperfecta) 
Children who have OI are often referred to as snowflake children or snowflakes. People with OI have very sensitive bones that can break or even shatter in some cases, thus they are delicate like snowflakes. There is currently no cure for OI.

Source: Caroline Bailey's FB

Maggie Bailey, my 1 year old 2nd cousin-in-law, was born with OI. Mags does not let OI stand in her way. She is a very active, intelligent little girl who has a heart of gold. Her older brother, Cooper, was not born with OI. You can read more about their family at http://www.coopandmags.blogspot.com/.

Source

"Epidermolysis bullosa (EB) is an inherited connective tissue disease causing blisters in the skin and mucosal membranes, with an incidence of 1/50,000. Its severity ranges from mild to lethal. It is caused by a mutation in the keratin or collagen gene." (http://en.wikipedia.org/wiki/Epidermolysis_bullosa) 
Children who have EB are often referred to as butterfly children or butterflies. People with EB have very sensitive skin than can come off with even the simplest of touches in some cases, thus they are delicate like butterflies. There is currently no cure for EB.

Source

Jonah Williams, a 2 year old little boy who attends my church, was born with EB. His mom, Patrice has a blog located at http://patriceandmattwilliams.blogspot.com/. If you'd like to learn more about Jonah, their day to day life and about EB in general, please visit her site.


So why did I feel the need to make a post about two different diseases? Because, I'd like to do my part in raising awareness. The more people that know, the more people that can help raise money to find a cure.

Why did I feel the need to tell you about two kids that each have one of the diseases? Because, when a face is attached to a name, even the name of a disease, it makes it more personal. You may not remember what OI or EB stands for, but you'll remember Mags and Jonah. You may not understand everything there is to know about OI or EB, but you'll remember how absolutely adorable Maggie and Jonut are.

What can you do for these children and others like them?
1. Pray
2. Let their moms know you're praying for them.
3. Donate. OI or EB
4. Pass on the info. you learn about OI and EB.

Knowledge is power!