Back in 2011 we launched the wolfhirschhorn.org discussion board and, although there was a lot of great activity from the community, it eventually became over-run with spam comments and we were left with no choice but to shut it down.
We have now cleared all the bogus messages and taken some additional measures to make sure it stays that way. So if you have any questions, advice to offer, articles to share or something to get off your chest just click on the DISCUSSIONS link and tell the rest of us about it…
Happy posting!
Ross
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I found your link from an article about baby Amelia and her kidney transplant. I had never heard about WHS but my son was born with Bilateral Cleftlip and palate, as well as several abnormalities as the result of Amniotic Band Syndrome. I was curious how you guys handle the cost of medical care. I had a horrid time getting any help for my son because he was not considered disabled because he can function so SSD/SSI was out, and we made slightly over the cutoff for state funded medical aide. Luckily we had private insurance but it had limits. Can someone tell me approximately what the average medical cost is per year for a WHS child? Now that my son is grown and has a family of his own we are always looking for new charities to donate to so any information is appreciated.
Thank you in advance and God Bless!