My sweet niece was just diagnosed with WHS at just a little over one-week-old. Her and her parents are constantly in our prayers, but my husband and I are curious if any parents out there have advice on how we can best support her mom and dad as they start on this new, unexpected journey.
Also - thank you to the creators of this website - what a fabulous resource.
Many Thanks.
L
My son was diagnosed at 1 week as well. The first year is hard with all of the doctor appointments that you have to go through but it does get better and my son is doing amazing at 1 year old! This website and the support of families is amazing so I would make sure they check out this website. Also, the support group http://4p-supportgroup.org/ is a good resource. Being there to support them and listen to them when they need is very helfpul. I felt very alone and having an open ear to listen to me and cry with me was very helpful. If they have any questions feel free to share my email address with them, jmdevriend@hotmail.com
I agree that sending them to a website like this would be a great start. New parents, myself included almost 3 years ago, like to google away and most of the information out there is quite outdated and very depressing. That is so difficult for new parents to read, very discouraging. Our kids are miracles, Riley continues to amaze us everyday. If you can help out by giving them a break every once in a while, all new parents definitely appreciate that much needed help. It can be so overwhelming initially with so many appointments and the future to think about. But they will get through it. We are all here to help. You can email me privately also, cordillh@yahoo.com
I am the creator of this site and there are so many great stories here for them relate to. Hope and happiness abounds all across this site. Make sure that they share their stories and allow the community to give back. We're all here to help them cope and be a part of what we have with our community!
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