hello eveyone,i have just been informed that jonny kennedys programme is going to be repeated again on channel 4 in sept around his anniversary keep your eyes...
Birthday Reminder from the Calendar of butterflychildren http://groups.yahoo.com/group/butterflychildren/cal Kallista Birthday Friday August 27, 2004 All Day ...
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Aug 26, 2004 10:42 pm
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Birthday Reminder from the Calendar of butterflychildren http://groups.yahoo.com/group/butterflychildren/cal Rachelle's Birthday! Tuesday August 31, 2004 All...
I posted a new pic.... check it out ;) It ain't the Dee you knew and loved! Kevin take a look so that I don't frighten you to death at the next board meeting...
Thanks kevin, sorry I'm a bit late I've just got back from holiday. How's
Alice doing. Hope she's well. Rachelle ... From: butterflychildren@yahoogroups.com ...
-so far so good rachelle she is on thyroid replacement hormone and is not getting so tired now.we have a wedding to go to on saturday week so she is looking...
I'm two steps ahead of you Kevin - I've got a massive collection of safety pins, most of them are in my clothes but two of them were in my ear since June. I...
Kevin I thought you might be intersted in this article I found on the net. Jonny's legacy One man's death from a rare skin disease has provided other sufferers...
hi rachelle,i had heard from the debra ireland office that the programme was going to be shown again in september around the time of jonnys anniversary it is...
-lori this is a programme which aired on a station called channel 4 in the uk and ireland.if a station in the us buys it then it will be on there.it is not...
-have you given anymore thought to my suggestion about going to grafton street and posing for the tourists for a fee i,d say you would clean up lol kevin -- In...
Kevin, I read the article on it. It really sounded good and I wish I could see it. Oh well! What a completely unbelievable thing to do, to make a doc. about...
Well I'm not sure it would work on Grafton Street but I found my new home yesterday, definitely Templebar - no one stares when I walk around there. Even though...
-- emma hangs around there on saturdays she goes to something called blast bands play there every week kevin - In butterflychildren@yahoogroups.com,...
Birthday Reminder from the Calendar of butterflychildren http://groups.yahoo.com/group/butterflychildren/cal Neal's birthday! Monday September 13, 2004 All Day...
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Sep 12, 2004 10:40 pm
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Birthday Reminder from the Calendar of butterflychildren http://groups.yahoo.com/group/butterflychildren/cal Colin's birthday Monday September 13, 2004 All Day...
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Sep 12, 2004 10:40 pm
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Hey new member :) You're in! Sorry it may have taken some time to approve you... this place has been a bit dead (ok, very dead) lately. I'm guilty. Somehow I...
Hi Erin, What type of EB does the baby have? I can't offer you much advice personally, as I've never been around a baby with EB - just been one! There are...
Junctional Epidermolysis Bullosa with Pyloric Atresia she was 3 months old on the 14th, she is very uncomfortable. Thans again, Erin ... one! ... able ... if...
Birthday Reminder from the Calendar of butterflychildren http://groups.yahoo.com/group/butterflychildren/cal Happy Birthday Heather Raine Friday October 22,...
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Oct 21, 2004 10:41 pm
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Junctional EB would be a lot more severe than what I have had to deal with, in fact taking care of skin with Simplex and the more severe forms is practically...
Hi Erin, I had a niece who had Junctional EB and I know she had an Haberman feeder
for her drinks but to my knowledge she had a normal pacifier. At the time...
Hi Erin, I have just re read your email and realised your daughter has
Junctional with Pyloric atresia. My Neice Brogan also had the exact same
type. I have...
Trevor has JEb-H and we never were able to find a pacifier to work for him. The bottle nipple also ripped his mouth apart. We dropper feed him until a g-tube...
