Celebrate Rare Disease Day!

This year, Rare Disease Day is February 28th in most countries. There is one place in the UK who will host a gathering Tomorrow, Feb 25th and a couple on March 3rd. I just learned about it and wanted to put a link up: http://www.rarediseaseday.org/ I couldn't find any place in the USA where there is a gathering for families and children as is happening in other countries. I suppose there are? But the UK has three sites planned, as I said earlier, and Ireland has one event planned on the 28th in Dublin. Again, just like us we don't live all that close to where the cool stuff happens.
Any way, The UK's You Tube video was better than the USA video.
But visit the site. I also wondered what "disease" meant? It is interchangeable with "Disorder" for our purposes on Rare Disease Day!!

Greetings!

Things have been slow on this site. Special thanks to Danielle for pointing that out. I think I will start posting photos of things just related to Makenna and her care to make a post. And it may serve a great service to people who stumble on this site? For example: Makenna hasn't been feeling good, so we have been hanging out together for a few days. And at one of her feedings when I decompressed her I got a "classic syringe half full of yellow stuff"! (not just a little but a lot) And I thought, "I should take a picture of that because it has been months since I have seen that!" And Sheri and I had to wait a long time to see our GI doctor to question how normal that was (years ago when we saw it all the time). We really began to panic. So I think a photo of that here would be a great community service. And when the Internet begins to incorporate "smell" you will get the full effect. ...I guess a bright shade of yellow, thin, smelly fluid is normal (they said then). I am saying it is "normal" when the kid isn't feeling good. I wish I could narrow that down some more but I can't.
And this blog has always been a place to announce any new information about the http://www.pierpontsyndrome.com/ website, which doesn't give me a lot to write about either. But I did receive a letter from the family in Northern Ireland!!! (That would be "boy two" in the first AJGM article. Or Dominic!) I don't know how much I can share about this boy either? We haven't gotten to the point where I can give names, or many details... but his mum said she would send some pictures to include on the website. This would be through a friend/service provider who does use the Internet. (I really want to type her name here and thank her! I won't till they say I can, but thanks "A"!) I will give that a while to happen and if it doesn't I will scan some photo copies and see how that looks on the web, because I do have permission to put some photos up. I will summarize her letter to me as (this is the part I don't know if I have permission to say so I will be precise and mostly vague), "Dominic is 14 years, 9 months old now. His vocabulary is one word, but is very vocal! He does eat orally, with some modifications. He has scoliosis which will require an operation, and is on a waiting list." My thoughts are: He looks like a happy, bright boy who anyone would enjoy being around, and they do!! And a glimpse 9 years into the future was priceless for ME!