How can I help other parents searching for information?
  ..Click on one of the buttons below to access tips and stories contributed by other BWS families

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There are many ways in which you as parents can help make this site as informative and useful as possible for other parents searching for information to help their kids. Remember when you first found out your child had BWS and you thought "She has WHAT? I've never even heard of Beckwith Wiedemann Syndrome before!" And then you started searching for clues as to what this disorder was all about and you felt like you were searching for the Lost Ark or something else equally as elusive. You can help parents who are just now finding out their child has BWS by giving us any insights you've had along the way. The following are a few of the types of questions you could answer for us.

1)   Are there any particular tips you would give other parents? 
2)  What types of surgeries has your child undergone?
3)  Where did you have your child's surgery/surgeries done?
4)  How old was your child at the time of each of the surgeries?
5)  Would you recommend to other parents to do this particular surgery at that age?
6)  Would you recommend the hospital and/or surgeon?
7)  How have you managed to cope with any major hurdles you've had to overcome?
8)  Have you discovered any ways to make dealing with insurance companies any easier or more efficient?
9)  How have you managed to keep your sense of humour?
10)  Anything else you would like to add? Please do so!
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Tell Your Story
If you would like to tell your story (even if you are at the beginning of the BWS road), please mail it to: Julie.  We will add your story to our site so other parents will know they are not alone. Although certainly not required, you may also wish to include photos of your child to be added with your story. This can be done by sending your images as attachments in either .jpg or .gif format. Stories submitted about children with BWS must be submitted by the legal guardians of these children. Stories submitted by grandparents who are not legal guardians, for example, will not be added to the site until written permission is obtained from the the legal guardians (in other words, the parents must email Julie and give their consent to have the child's story added to the site)...

 

Confidentiality statement: It should be noted that any information written in correspondence with the manager of this web site will be kept strictly confidential unless the author specifically requests otherwise (i.e. when submitting tips or stories to be added to our web site). Even in the instance of stories or tips being added to the web site, only first names are retained in the stories and only state/province and country information are retained, in order to protect the privacy of those submitting stories or tips. Any requests for information, support etc will be held in the strictest of confidence and will not be passed on to third parties.

 

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Disclaimer: All information on this site, except for that from the doctors and researchers, is given by volunteers and parents. The information given is non-professional advice only and is not meant to replace the medical expertise of your doctor. The creators of this web site do not censor or edit tips submitted and are not responsible for any errors or misinformation. Please consult your physician for more information on how best to treat your child.

this page last modified: Friday April 06, 2007