Raising Awareness Is Tough

Iv been properly raising awareness for Exomphalos / Omphalocele since January . 
The reasons I wanted to do it are :

1: Its a condition I was born with and its something iv been badly bullied over.
 
2: Its not recognized here in Ireland and I want to try and change that. I want it to get as much recognition as other conditions.
 
3: I want to reach out and bring other survivors and parents together , to help them and give them the support they deserve. 

4: Not many people know about Exomphalos / Omphalocele or understand the condition and I want to help people learn about it and understand it.

Raising awareness is tough and the way to go about it theses days is through Facebook. at first people have your back and say well done but its short lived and after about 2weeks people aren't as helpful about sharing your page and to be honest I took it to heart because its so personal to me . I kept asking myself why don't they want to help me ? do they not care about how important this is to me that this is a condition that I nearly died from.
When you are raising awareness for a cause or condition that is so close to your heart its hard not to take it personally and there were days where I was so fed up but I am trying to stay positive and just work hard & focus on whats important .