Merry Christmas everyone , I hope this email finds you all well , I am so sorry I havent written in a while , I have been pretty busy with Sammy-Joe . I hope...
hi everyone i hope everything is going well with everyone. the stress of everythink in the house has got to me and my husbund so we are now separted. the girls...
Hello Irene I am so sorry to hear that you and your hubby have decided to seperate , the pressures of having a child with an illness is enormous , if you need...
Hello Everyone: I hope that this letter finds everyone in good spirits after the holidays. Irene I am so sorry to hear about your seperation. I know that at ...
Dear Friends We Wish You and Your Family a Very Happy, Prosperous and Healthy NewYear. May all your wishes come true by the grace of god. Prayers and good...
Dear Friends We wish you and Your Family a very happy, prosperous and healthy new year. May all you wishes come true with the grace of god with bright and ...
Katie, That is such WONDERFUL news! Good for Megan (and you)! Hope your NIH trip goes well. We went in November, and I've been meaning to let the group know...
Hello Katie I am so happy to hear that Megan has improved , she sounds so much like Sammy-Joe , does she have she have problems chewing , or is she improved...
Hi Everyone~ I am so sorry that I Have not been writting much. Things have been crazy around here lately. (Nothing new ... wink) Collin is doing pretty good....
Great to hear that all turned out fantastic at the NIH , it is great to know that these wonderful group of doctors are looking out for our kids , we love them...
hI SUNITHA thank you for writing , I didnt get to see any photos , could you send them to me and I can post them in , maybe we are having trouble uploading...
Hello Julie , sorry to hear that Collin has had some aggression , what meds is he on now ? Sammy-Joe had a full on temper tantrum today which really freaked me...
I finally found the photos , you have a beautiful family , I also found Tylers photo , wonderful photos all , I feel that we have a wonderful family , we are a...
Hi, Has anyone tried any of the Kigelia (an African tree) products? We've just received a copy of a report from a friend in the UK saying that it has...
hello all! we live near the NIH and feel very fortunate for that. if anyone is planning to visit that NIH, we would love to be the "welcoming family" for those...
Happy New Year to you all. I hope everyone had a happy holiday, merry Christmas, happy Hanukah and all that. Things have been very hectic around here. Ashley,...
Kelly MacLeod
kmacleod@...
Jan 7, 2007 6:47 pm
1527
Oh Terri! I would love to meet up with you when we go back this year. We went on Mothers Day last year so we don't want to do that again. It was a mess! Collin...
Hello Terri: Yes Megan and I will be comming to NIH in May, and we would love to meet you. You will be the first person from the group that I will have the...
Hi Lee, James has had real problems with the itching and eczema. We have battled it for years but have recently had success with an ointment from England...
Happy new year everyone. It is a long time since I've written but things have been hectic here. James is doing really well at the moment. At the end of last...
Hi Lee I am not familiar with this product , but if you can send me a link maybe we can add it to our website I have just come across a new crystal soap called...
Hello kelly Great to hear from you , sorry to hear that Ashley was pretty sick , I hope she is fully recovered now . It is so good to hear that you will...
Hi Terri We are hoping that we will get to go to the USA in Sept and visit the NIH again , so I would love to catch up then also . Maria , Joe , Sammy-Joe and...
Hi there Julie , I check on Collin everyday but dont sign the guestbook everyday , what medication is he on now ? and how are things going , I love all the new...
I've just joined this group and I'm hoping for so much needed information. My son Luke was recently diagnosed with ttd. He has been a "mystery" case to...
Hi Sharon, Talitha has used all of those you have listed. We were told that the Tacrolimus was no longer available and we were put on to Elidle (?) for a ...
maria, just let me know when you are going to be near and i will arrange my schedule so we can visit. i am hoping to be able to meet many of the families that...
Hi Lee, You can buy snowfire over the internet from suppliers in England and some do post to Australia they will send 12 at a time. It is an old fashioned...
Hi, My daughter is 8YO and we live in Brisbane, Oz. I've generally just been a lurker on the group but started a chain recently about a possible skin balm. ...
