26 years ago I was born Exomphalos Major, My liver and intestines were in a clear sac outside my body. I only weighed 3lbs . I was a miracle baby.
I am the face of hope for 100s if not 1000s because there are no more than 100 of us from around the world in the support group.
As a survivor, I have gone on to get married and have two children. Though this may not be of importance to some people to parents of Exomphalos babies it is massive. Parents of these children live with the not knowing what the future brings for their children. For adult survivors there is always the question of if they will be able to have children.
There is no proper support here in Ireland for adult survivors or parents and I want to change that.
Last year I set up a support group .
In January I made an awareness page and there you will find facts and information about Exomphalos which is known as Omphalocele in America. You will find the awareness video for 2016. The awareness Ribbons and newspaper articles and radio interviews that another adult survivor and I have done.
There are other survivors and parents in Ireland who do not know about the group or page who deserve love and support. All im asking is for you to like and share the page help me spread the word so we can reach those parents and survivors. Also check out and like and comment on the posts on the page tell us what you think.
Thank you to everyone who has supported us so far it really means alot .
https://www.facebook.com/ExomphalosOmphaloceleAwareness/
- Edwina Wrenn O'Connell
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