Stop Doubting Yourself Work Hard & Make It Happen

“When one door closes another one opens” ” Two steps forward one step backward” are sayings that are very relevant this week.  Just when you think things are going well & you feel on top of the world that things are working out , out of nowhere you fall down . The reason being you take things for granted . Make the most out of every moment , don’t take little achievements for granted ,that when a little knock happens and they will happen that you don’t feel like it’s the end of the world and feel like giving up. That feeling won’t last for long because when you make the most of every little achievement and not let the little set backs get you down and try and see the positive side to those set backs it will drive you to work harder & it will make you a stronger person.

When you have put all your energy into something for over a year and even more so in the past 5 months , when you are so engrossed in what you are trying to achieve that you don’t notice and appreciate your achievements so far those little set backs can feel so overwhelming and i am very guilty of that. This week i’ve been looking back on what I have achieved so far and appreciating all the little things & working on not letting the setbacks get me down.  Even though a setback happened a wonderful opportunity came my way and I grabbed it with both hands It was definitely the boost I needed to get me out of my slump .

Don't Be Ashamed Of Your Story It Will Inspire Others

People wonder why I am telling my story. It's simple I grew up knowing nothing about the condition I was born with. I felt alone I didn't know anyone who was born with the same condition as me, I didn't have anyone I could speak to who knew and understood what I was going through and because I was so different to other people because I didn't have a belly button I was an easy target for bullies and the reason being they were ignorant and ill-informed. Instead of trying to understand why I looked the way I looked they chose the ignorant phrase of saying I was born inside out saying I was an alien and a freak .  

Being kind and helping others costs nothing. There is no real support in Ireland for parents and for survivors of Exomphalos / Omphalocele. I want to change that. Parents and other survivors deserve love and support. That’s why I set up the Irish support group and created the awareness page so it might reach others.  

It's hard to describe how amazing it is to talk to people who know what you are going through that you finally don’t feel alone, you don’t feel so different that there are others just like you. Each case is very different as each Exomphalos / Omphalocele differs in size and content. Then you have the size and weight of the baby as well . One-third of all babies with Omphalocele have liver herniation, which is often associated with a small belly size and small lungs (known as pulmonary hypoplasia), two factors that can affect treatment and long-term outcomes. Up to one-third can also have a heart defect which can also affect long-term outcome. Not all babies survive . 

Some people take getting pregnant for granted. Some survivors have different stomachs to others, some of them don’t have enough muscle to be able to carry a baby or there might be other health issues that prevent them from getting pregnant. It’s a worry to parents and to young survivors if they will grow up to have a family. I am lucky to be one of the survivors who has gone on to have children. There are other survivors who are moms in the group who are inspirational lovely women. We are the face of hope for 100s if not 1000s, of survivors and families there are no more than 100 of us from around the world in the support group .  Telling my story brings hope to parents and other survivors that they can have a normal life.

 

Thank You

A massive Thank You to everyone who has supported us over the past four months it really means alot to us that people are helping us spread the word about Exomphalos / Omphalocele Awareness .

Thank you to Richard Lynch from Ilovelimerick.ie & Bernie English from the Limerick Post for the amazing articles written about Exomphalos / Omphalocele Awareness Day. 

Thank you to Limericks Live 95fm & Wired Fm for having me on to talk about Exomphalos / Omphalocele Awareness. 

Thank you to TD Tom Neville and Cllr Daniel Butler for all your continued support and advice . 
 
Thank you to Robbie H. Andrews for your words of wisdom and encouragement  that keep me going.
 
To all our family and friends ye have been the best Thank You =] x 😊💗
 
Lots more to happen this year watch this space

My Scar

After well over 18 years of bullying I am still standing and I am proud of my scar .it's my war wound. I am not only a survivor I am a warrior. I am incredibly lucky to be here today as unfortunately many babies who are born with exomphalos / omphalocele don't survive. the abuse I have dealt with for being different I wouldn't wish on anyone . I am proud of my scar and hope the little ones I know that were born with exomphalos / omphalocele grow up to be the same. 

Scar photo is when I was 38 weeks pregnant with my daughter 

I am Invincible

Last year when I first heard this song I really connected with it. As a teenager after years of bullying I was ashamed of my scar I was ashamed to tell my story but when I turned 20 and found an online support group with people like me I didn't feel alone anymore I would be lost without those people iv made some amazing friends from around the world because of it. As I started talking to the media about my story not only listening to a friends videos ( link https://www.facebook.com/RobbieAndrewsPsychicMedium/ ) helped me but iv had this song on repeat and its given me the strength and courage to speak about the condition i was born with  =] I am invincible now =]

Pictures Of Me & Articles Im In =]

 Article in the Limerick Chronicle Newspaper , Its on ilovelimerick.ie aswel =]
Thank you to Richard Lynch for writing an amazing article x

Article in the Limerick Post Newspaper, Thank you to Bernie English for writing a lovely article =]

Photo collage I made from the beginning of my journey to now =]















This slide was used in the Omphalocele Awareness Video by Jolyn Louise

Meeting Another Survivor Like Me =]

On the 5th of March I traveled up to Ashbourne Co.Meath to meet up with Sarah Greally who is another adult survivor and who helps me run our Irish support group and this page. It was the first time we had ever met someone else born with Exomphalos. 
It was brilliant to finally meet her and I can't wait for the next catch up. 
😊👍
Sarah on the left 😊 me on the right

 😊 💗

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 . 

 

Links to Newspaper Articles , Radio Interview and the Awareness Page .

Here is a link to my interviews with the Limerick Post & Limerick Chronicle http://www.ilovelimerick.ie/2016/omphalocele-awareness-day/

http://www.limerickpost.ie/2016/02/01/hope-for-exomphalos/

The link to the Facebook awareness page https://www.facebook.com/ExomphalosOmphaloceleAwareness/

Link to the interview i did with Wired Fm https://www.mixcloud.com/wiredfm/the-community-show-an-interview-with-edwina-wrenn-about-exomphalos-omphalocele/ 

My Exomphalos / Omphalocele Story

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