On a Personal Note

This website is Dedicated to the Memory of my late Nan, who with out her comment, and money left in her will, to me, then none of what we are doing would of happened. and this is why we take nothing from this idea every thing goes to bringing about change.

Message left read  …… You could change the world if you put you mind to it Stephen.

~

Please Note

 USA Words are spelt differently then UK  words, but still have the same meaning.

This website is in the UK.

(I have very bad Dyslexia as your see reading this site. I am a strong believer in trying, then making excuses as to why I cant)

~

This Website is always growing with more information to help YOU being added all the time.

Take a look… you never know what you might come across.

Use the NEW Search tool to help.

~

First World Survey

An Idea is Born

This website is a platform to help reach out to many countries

With the backing of leading World Doctors we have brought you the First Ever World Survey.

Written in the USA

WE HAVE THE BACKING OF DOCTORS LIKE DOCTOR R JENNINGS

and Others around the World, as they REALIZE the IMPORTANCE of this Survey

The study is being conducted at UNC, and has been IRB-approved by UNC.  Dr. Evan Dellon is the PI.  No personal identifying information is collected.  Any patient with EA/TEF or caregiver of a patient with EA/TEF is eligible to participate in the study by clicking on the survey link.  The survey link can be shared without additional IRB or ethics agency approvals.

 TOF-OA, and, EA/TEF are two names for the same condition. TOF-OA as it is more commonly known as in the UK and EA/TEF in the USA.

It’s up to you to be involved,

PNG

Click to enlarge

A Worldwide Survey to Assess

Characteristics and Long Term Outcomes in Patients with Esophageal Atresia (EA)

We have the Support of the world known,  DR R Jennings From Boston USA for this

 Thank you for your interest. This is an IRB approved study & will look at the characteristics and long-term outcomes of patients with EA. If you choose to participate, you will be asked some questions about your disease and treatment.

Do I have to complete the survey?

Participation is voluntary, meaning you can opt out, but we hope to use the information to help improve care for patients with EA.

Who can take the survey?

This survey is for patients of all ages with esophageal atresia AND parents/caregivers of patients with the condition too. If you are younger than 18 years, please fill this survey with a parent or guardian.

How long does the survey take?

This survey should take no more than 20 minutes. You can stop at any time and continue from where you left-off at a time more convenient for you.

Do I have to answer all the questions?

All questions are optional. If any question makes you uncomfortable or you don’t want to answer, you can skip it.

Is the information safe?

The information you provide is completely confidential. We will not share your information without your permission. You will not be contacted by any member of the research team.

How will my information be used?

The information you give us will be studied by our research team. It will be used to improve healthcare delivery to patients with esophageal atresia.

If you have any further questions regarding your rights as a research participant

please contact the University of North Carolina Institutional Review Board

email: irb_questions@unc.edu,

phone: 919-966-3113)

If you have any study related questions please contact the Research Team (phone: 919-966-2511).

 Thank you for helping us. We believe this project has excellent potential to improve healthcare for all sufferers of the condition.

Yours Sincerely,

Evan Dellon, MD, MPH

CEDAS

Center for Esophageal Diseases and Swallowing

_

Letter from the Lead Doctor behind the first ever world survey any questions please ask him and his team.

_

 I am very happy to confirm to you that this study is legitimate and that I am the lead research. I am an associate professor of medicine and epidemiology at the UNC School of Medicine, and the current Director of the Center for Esophageal Diseases and Swallowing here as well. As a gastroenterologist, I focus exclusively in my clinical practice and in research on esophageal diseases. I have published more than 100 papers on esophageal disease alone, and more than 150 papers total.

 This is the actual direct link to the survey:

http://www.birth-defect.org/worlds-first-ever-survey/

 The first letters of the URL are “unc”. The survey is hosted using the Qualtrics platform, for which UNC has a license, and which is behind the UNC firewall. That is why there is not a .org or .edu in the address. The website where the link is posted (http://www.birth-defect.org/worlds-first-ever-survey/) has nothing to do with the data collection, analysis, data management, or storage or the data. They have simply posted the link (more on the website below), which then takes you to the UNC/Qualtrics site where the survey is housed. This study has been approved by the UNC IRB with me as the PI (IRB #16-1785; date of approval 7/5/16), and after clicking on the survey link, you are presented information about the study and the UNC IRB. In addition, we are not collecting any personal identifiable information and the survey is completely confidential; data analysis will only be in the aggregate. I have been involved in a number of survey studies using this platform where the link to the survey has been posted on patient advocacy group’s websites and social media outlets. Of course, the survey is optional, so each participant can decide whether they want to complete it or not.

 Thank you for raising the point about the US-focus of the questions. I developed the survey with my colleagues here at UNC but would of course like anyone from around the world to fill it out. If there are specific questions that are confusing or have units that don’t translate, please do let me know exactly what they are and how to clarify them. At this point, I can’t change the content of the existing questions, but can go to the IRB to get additional approval to add clarifications, or perhaps even add an additional question or answer option (particularly related to the NHS or other nationalized health systems).

 I have also heard comments related back about the validity of the data and how it will be possible to know that people filling out the survey actually have the condition. That is a very reasonable question, and one of the limitations of this kind of survey data collection. However, in my experience it is very rare for someone who doesn’t have a condition to “fake it” for the purpose of filling out a detailed survey like this. Nevertheless, it is one of the points that is discussed in detail in the actual publication that will result from this study, in the limitation section of the paper.

 Finally, a word about the website www.birth-defect.org. I became involved in this process through one of my patients. His wife is a strong esophageal atresia advocate in the U.S. and had been interested in working on a survey collecting long term patient-reported outcomes. She has a close relationship with the gentleman who runs this website, who himself has esophageal atresia (his story is posted here on the website: http://www.birth-defect.org/my-story-born-with-tofs/). He created the website himself and without professional assistance. However, he has a large contact list, and between him and my patient’s wife, it seemed that this would be a good place to initially post the survey link, with the hope that other advocacy groups would pick it up and pass along the link. This is what I have observed with other such studies I have done.

I hope that you can tell by the length and detail of my response that I am fully committed to this project. If you feel it is appropriate to post the survey link on your website and publicize it on social media, it would be great. The more people that fill out the survey the better the data will be on long-term outcomes. Also, if you don’t mind, can you send me the link for your website, as I’d be interested to see it? However, if I haven’t provided enough information on the legitimacy of the project, then I understand that too. This survey is completely voluntary.

 Thank you, and let me know if you have questions.

 - Dr. Dellon

CLICK THIS LINK BELOW TO HELP CHANGE HISTORY

http://www.birth-defect.org/worlds-first-ever-survey/

No Personal data will be taken

The study is being conducted at UNC, and has been IRB-approved by UNC.  Dr. Evan Dellon is the PI.  No personal identifying information is collected.  Any patient with EA/TEF or caregiver of a patient with EA/TEF is eligible to participate in the study by clicking on the survey link.  The survey link can be shared without additional IRB or ethics agency approvals.

 TOF-OA and EA/TEF are two names for the same condition. TOF-OA as it is more commonly known as in the UK and EA/TEF in the USA.

CLICK TO ENLARGE you will be asked for your DATE of BIRTH, please note you will need to enter this in USA format. See below for an explanation.

Survey Link Page

http://www.birth-defect.org/worlds-first-ever-survey/

DARKER Black

As an Adult with this there is a real concern that the Doctors are only looking at Children, yet all Children Grow into Adults.

They need this info to be able to understand and help

This is the FIRST SURVEY of this SIZE ever done. I was born in 1962 and only NOW are they thinking about the FUTURE… that in its self is very SCARY.

WE HAVE THE BACKING OF DOCTORS LIKE 

DOCTOR R JENNINGS USA

and Others around the World, as they REALIZE the IMPORTANCE of this Survey

~

Este sitio web está dedicado a la memoria de mi difunto Nan, que con su comentario a cabo, y el dinero dejó en su testamento, para mí, entonces ninguno de lo que estamos haciendo sería de lo ocurrido. y es por eso tomamos nada de esta idea cada cosa va a producir el cambio.

Mensaje dejado leer ...... Se podría cambiar el mundo si se pone Le importa a ella Esteban.

~

We need your HELP

This will melt your heart

Please read this

Over the time I have been working on this website people have asked me why do you do this, well that is a simple question to answer, for me its to bring about change, to be able for people to link together to build their own support network Bev and myself though our group have managed to link Families together across the world, Families that may not have known about others living so close.

What we believe is that the more we link others up the better the understanding, and we set out to do just that, there are 100's of Families out there that now have their own support from others.

Now

There are Doctors in this world that can teach other Doctors, from less well of counties, the skill they have in saving a child's life

I heard a rumor the other day of a well known Doctor from the world famous Boston Hospital being asked to travel to South Africa, to help Doctors save a Child's life, even just over seeing the op that is needed,

But it seems the trip has stalled, so I have been asked by the Parents of this Child to see if this website can ask you the Parents, or even Doctors to email the Bosses to allow this Doctor to travel,

in doing so allowing others to learn how to do this complex op on this Child.

Please watch and hear the song about the Child's fight to stay here in this world. I am posting this here because the Parents have asked us for our help

Remember this could be your child, and we ask for your help in emailing the bosses of this very humble Doctor to travel to teach others.

Baby Caylem NEEDS your HELP

Click this link, hear the song to

https://www.youtube.com/watch?v=a7wXM-fK-Bg?rel=o

Published on July 29th, 2016

From Steve

(Like so many Children in this world the lucky one's are helped but for this little boy there is no one in his Country able to do this op needed to save his Life)

Understandably, The Leading USA Dr cant leave his workload in USA to help Caylum in South Africa, but the thought turned to possible raising enough money to get him to Boston?

So I guess your wondering why I have put this request by the Parents on the front page of this website, well maybe if we raised enough awareness around the world about these conditions these children have, we could get Doctors in their own country's interested in learning from the People who teach our Doctors.  

Its a long shot but we have to start somewhere so why not here

I would like to ask my facebook friends and their facebook friends to help this little boy. Little Caylum needs our help as well as our donations in order for him to lead a normal life. Only a doctor from America is able to do this much needed operation for Caylum and the costs involved is very high. I'm asking everyone today to please help. Please take 10 minutes out of your day to help.
.

http://www.caylum.org.za/index.php

We at Bank City Pharmacy would like be part of Baby Caylum’s journey by sharing his story and trying to raise funds to

Help us to reach 10 000 likes for this post and Bank City Pharmacy will donate R 10,000 to help Baby Caylum to get to Boston.

Click Link below, and like to help send this Child to the USA Please

https://www.facebook.com/hashtag/getcaylumtoboston?source=feed_text&story_id=688578544651489&pnref=story

Please click above and LIKE to help

https://www.facebook.com/caylumwillemse/posts/306513239699374

 Every Child needs hope x

THIS IS THE REASON WE ALL NEED CHANGE

~

Please click on your, Phone make above, to be able to get the FREE Phone APP

RE Phone App, As I up date this from time to time if you find your App wont load just re-start your phone, just needed up-dating your end.

Many Conditions found on this site have links between them

~

DON'T let the world CHANGE your Smile, make your Smile CHANGE the world

~This website is run for Parents by Parents, from around the world, regarding Conditions found within this site. (We are not a Charity)  But your see from within our site we do support other Charities, big or small, because we feel that they do fabulous work. From putting a smile on a child's face on a ward, or granting a child that special wish, or an ear to listen to you and understand what you are going though, all these Charities I have been in contact with first. Or they themselves have asked.


Website address used to get you here

www.birth-defect.org

www.steve-tofs.com

www.Tof-mum-Bev.com

www.ea-tef.com

www.tof-oa.com

Screenshot_2016-03-01-14-06-24

Find this above logo as a free to download on our PDF page, use as you like.

~

on the 8th-01-2016 this was posted onto our group page, we have removed the Parents Name

Just want to say a huge thank you to Steve Wyles and crew my son was having trouble getting a work placement for his college course so I went to see a perspective employer and explained about his condition ... Thanks to Steve and all the information on the website and within the app they accepted my son on the placement as after I gave them the links to both the realised that any information they needed was provided on the app and website so a huge thank you for all the time money and ideas you have achieved so far and for helping all of us help each other with our personal experiences .... Just shows all this hard work is paying off in more ways than one not only are us parents benefiting but we are also helping to spread awareness.

(So as you can read above this Website is helping others in many ways not just the Children on younger ages)

~

Facebook-Logo

Our Group has reached 2831 Families, From 57 counties.

Read the Support page to see how many Counties this website was hitting when the letters where writon, and that was in only 6 months.

LOOK ON OUR PAGE FOR FACEBOOK

Meet the Tof Mum that Runs this Group.

Group: Born unable to Swallow / Birth defect

The Group is run by Parents for Parents so advice given is from a Parent going though this now, the same as you are.

Bev Stark 

Who and what Bev knows is Staggering

www.Tof-mum-Bev.com 

Meet Bev and her Tof Son Bailey

IMG-20151210-WA0023

~

 FREE ITEMS to help........    http://www.birth-defect.org/product/pdf-files/

Posters, FlyersBusiness Cards like below, Pre-writon  Drs Letters etc

allows you to be able to print from your own home allowing

YOU to help US drive HOME the AWARENESS

This Site is reaching far and wide, and bringing the info found here to many families, and being shared by World Hospital's and Doctor's, as this Site is, we are told very unique, as one Leading UK Doctor emailed us.

~

We are getting Doctor's from all over the world supporting this website, by sharing with the Parent's they are coming into contact with, meaning they support the efforts being put into this website, the site was built for raising awareness, and empowering families with trusted resources.

http://www.birth-defect.org/letters-of-support/

Look at this Page

http://www.birth-defect.org/ea-tef/


What We Are All About

What I have learnt in doing this Website, is there are some real honest and hard working people out there, and saw what I wonted to do and said, can we help to. Though our group we have linked up families rite across the world, linking them up with Parents who live close but never knew it. Our group works really well, no-one looks down on anyone, as we are all linked in some way to each other.

We have linked up with others, running support groups.

~

Our Free Phone app now has a link to a Mum in the USA who has a TEF SON, who is running a blog on food

so if you have a phone, all this is at your finger tips via our phone app

We all carry phones, so we have the world hospital page linked to app showing you names,

Drs, phone and contact details for Hospitals who are used to dealing with what we cover on here,

Given to us by Parents like you.

~

When I started this all off I thought it would be great to at least change one parents life......

We have gone way passed that now, linking 100's of Family's together across the world, if your reading this thinking you'd like to join in your be welcomed with open arms. its all about TEAM WORK and if your joined our GROUP your also see the Support this Website has from leading Drs.

~

We would like to say THANK YOU to the firm that built this site, by giving us a year web hosting FREE in Support of what we are doing.

http://www.madisonsolutions.co.uk/

Please share our Website.

2016 is here our GOAL is to reach out to the MANY who still feel like you did before you found us. 


And Myself (ADULT TOF)

Me at 50 with a good Friend

2011-09-13 18.46.39

Born unable to swallow gave me a fighting spirit to enjoy life, I have gone from 60 ton, up to 22 meter yachts to repairing jewellery,

meaning that if you put your mind to something, then anything is possible.

I have bad Dyslexia as your see reading this site, I am a strong believer in trying, then making excuses as to why I cant.

Never give in when someone puts a wall in your way, look, think, and find away around it, because reaching your goal might as the cartoon shows be a few feet, or weeks, away. If you don't keep going your never know if just one day your make it work.

Screenshot_2016-03-13-10-02-31_resized

tofs = Tracheo-Oesophageal Fistula Stricture

www.steve-tofs.com

~

A New Book

A New Book Writon by Adult Tef + V.A.T.E.R

A Blister of Stars Paperback – 2016

by Jason Irwin (Author)

NEW BOOK

Jason Irwin was born with a litany of birth defects. A Blister of Stars is Irwin's interrogation of his own biography. His poems reveal the terror felt by a child confused about what is happening to his body; the endless surgeries and difficult recoveries, the strain it all puts on his parents both emotionally and financially. Irwin's luminous, reflective poems strive for solace in the face of horror, hold fast to faith while staring into the void. Jason Irwin is the author of Watering the Dead (Pavement Saw Press, 2008), winner of the Transcontinental Poetry Award, and the chapbooks Where You Are (Night Ballet Press, 2014), & Some Days It's A Love Story (Slipstream Press, 2005). He has also had work published in Poetry East, Sycamore Review, Confrontation, and Poetry Ireland Review, among others. He grew up in Dunkirk, NY, and now lives in Pittsburgh.

Buy it here 

https://www.amazon.com/Blister-Stars-Jason-Irwin/dp/0692711724/ref=sr_1_1?s=books&ie=UTF8&qid=1469535846&sr=1-1&keywords=jason+irwin+blister

~

 Our small Team we have would like to say THANK YOU

For your Support

  A New Year is here, Look what we have done in just 17 months with our Group made it the BIGGEST on FB

We bring you all this on a SMALL AMOUNT of Money, and Total Dedication

It is also TEAM WORK that will bring about CHANGE and UNDERSTANDING

Some of the info found on this website has been sent to us by Leading USA Doctors, and Research Hospitals.

And we don't even ask you for money

IF YOU LIKE PLEASE SHARE

On a Personal Note

This website is Dedicated to the Memory of my late Nan, who with out her comment, and money left in her will, to me, then none of what we are doing would of happened. and this is why we take nothing from this idea every thing goes to bringing about change.

Message left read  ...... You could change the world if you put you mind to it Stephen.

My Nan would of loved this video clip, it shows a few become a Group working together, and for me this is one reason I love doing this website and being part of a bigger group we run, because over time, its starting to take shape, I love the song lyrics, its something My Nan would of said, everything you wont is a dream away.... I do feel my Heart Beating when thinking on idea's to spread the awareness, plus being a Jeweller the song lyrics using the word diamonds, means something to me to.

Plus at the Brits Music Awards the lead singer made a very good point, lets think of those in the refugee camps, as we could be them, and they could be us.

I am glad my dance moves from my 20's have been used in the making of this video.... LOL

https://www.youtube.com/watch?v=QtXby3twMmI?rel=0

Love you always Nan x

“Never doubt that a small group of thoughtful people could change the world. Indeed, it’s the only thing that ever has.—Margaret Mead, author of quote.

~

 

THIS IS A DISCLAIMER FOR THIS SITE
This website is run for Parents by Parents of Conditions found within this site, and not linked to Charities, or receiving funds, or making a profit, funded by ourselves.
We are not here to cause any upset to other's, only to RAISE AWARENESS for OUR Children's, Rare Condition's. With the Help of World Doctors.
Although we do our best not to use copyrighted wording this site is only bringing all that is floating around on the world internet into one place to be able to HELP Parents and people trusted in looking after our Children.

Building a Site where Parents can understand the way Doctors talk using photo's, video, info sent by Doctors. Not used to make money, just to help Support the Parents understand.
Bringing the info together to build this unique site, has been a god send to families one Consultant emailed us.
(Anything found here, is here to help other's)

Liability:
For documents found on this WEBSITE we do not warrant or assume any legal liability or responsibility for the accuracy. Plus the resources on this site should not be used as a substitute for professional medical care or advice, but rather to provide users with information to better understand their health or their Child's diagnosed disorders. Specific medical advice will not be provided.

Useful Links...