Sue Paul Widow of Ea-Tef and Campaigner for Awareness
What you have experienced MATTERS to the US, and others. Remember the first time someone mentioned Esophageal Atresia, or Tef or Tof, and you thought “What is that”. “My child is born unable to swallow? How will he or she Eat? or Drink??” Can you imagine what it can be like to be born unable to swallow? Unable to eat, unable to drink, Unable to breathe normally? What your idea of normal is very different from most babies born around the world.
Your bundle of joy is now in an incubator, hooked up to tubes, and machines, and you’re told your newborn must-have life-saving surgery to survive. I can’t imagine what my husband’s parents went through when he was born in 1969 unable to swallow. My partner Steve Wyles, born unable to swallow in 1962 listened to me in 2010. He understood what OA was being a British bloke. He, and I and Chris Paul talked across the miles and thought about what two old farts with a complicated condition could do together for what I’m sure was others out there looking for someone who understands what he or she is going through. Shortly thereafter, Chris met Christy Cook, a woman EA survivor who started a charity just for EA families and their unique needs.
Christy’s Courage Foundation founder Christy and her other half met me and my other half at the Cracker Barrel restaurant in Lexington, North Carolina, and I was blown away at the relief I saw in both Chris and Christy after learning they were not alone. Going through long nights of emergency room visits looking for EA adult solutions, Steve was awake in London, and we talked about how wonderful it was that people meet for a reason.
We truly believed that together, we could get further with the search for solutions to EA in today’s modern world of medicine.
Sue Paul Widow of Ea-Tef and Campaigner for Awareness
My late husband, Chris Paul, was born unable to swallow in 1969. He died from complications of EA as an adult. If our website was available ten years ago, I might not have struggled so hard searching for the same answers you are looking for today.
Many caring providers and researchers want to hear from YOU. What worked for you and your condition? What didn’t work? What made things better or worse? How did YOU or YOUR LOVED ONES manage to succeed with EA.
Pacing hospital floors in the middle of the night, unable to help your family member ease their suffering and often frightening experiences of not being able to comprehend how anyone could suffer so much, and so few answers available. I know first-hand, front row what that journey was like. This is why I and our team members who have their own EA experiences and strive everyday thinking not about what we couldn’t do then, but what can we do NOW. This is the era of medicine joining hands with engineers and scientists and biotechnologists making progress with stem cell growth and bioprinting capabilities. NOW is the time to speak. Be heard. Let YOUR voice be heard. My husband always said if his suffering and his fight to live could help one person than he was willing to be a guinea pig to pave forward the way to solutions.
I wish www.birth-defect.org was around ten years ago. Think about how the simple everyday things you do, can teach another family how to not struggle so much. There are others out there that need you. Your few words could have a giant ripple effect on someone across the world.
Please send me your email, and express an interest to write your story, and our talented EA team will set you up to write from wherever you are. In the comfort of your home, or dealing with the agony of yet another hospital stay. A few moments of your time, a few thoughts could make a huge impact. Today you can do something. Now it is your chance. Today I choose to stand United with you, fighting for a way to connect with others to do for EA.
Sue Paul Widow of Ea-Tef and Campaigner for Awareness
It is truly amazing to me the concept of time. I have no sense of time. I am writing now one year following the death of my beloved husband Chris Paul.
I cannot begin to tell you the range of emotions that passed through me, engulfed me, consumed me, nearly destroyed me, but 365 days later, I am emerging from a very lost place to gaining a foothold on some solid ground.
A very good friend of mine told me to always move forward. I have always been a positive, goal-oriented, and an extremely determined individual. When I became a life partner and two joined as one, I gained such strength from my husband’s love.
( From Steve owner of this Website)
Chris and I became good friends he was in the USA I was in the UK, we talked about change for the Children.
R.I.P, Chris, I miss our Chats
