Hello everyone, I'm Colleen and my 15 month old daughter Quinn was diagnosed with NOMID in August. I am soooo thrilled to have found a support group for other...
welcome colleen and quinn. what a gorgeous name. we haven't needed a g tube so I can't help you with that good luck with your tests Louise (Tom in Australia's...
Colleen, Welcome to the group! I was about to write you back and saw you post here, so I am glad that somehow you got it to work! I have been trying to get...
Colleen, I just saw the photo file of Quinn, and she is adorable! Wow, she was really covered in rash! If you are willing, would we be able to use her photo...
Hello Colleen,Welcome to our group! I am glad for you to have found us!! Its a very frustrating state to be in when you know whats wrong with your child but no...
Hi Colleen and welcome to this wonderful place-I was so thrilled to have found it too -its great to meet other people in similar situations and I have found...
Hello Aisling, nice to "meet" you! I wish you and your little Jack well during a difficult time. Speedy recovery! Thanks for your input on the G-tube, you see,...
I just went through all of the pictures. Very neat. Thanks everyone for sharing. I wish I would have taken pictures of our art work. Bummer! Seth's was...
Thanks to Michelle and Aisling for the kind praise for Seth's painting. I hope we can see photos of Jack's and others at some point too! I will ask if...
... From: Louise Keatley To: nomidsyndrome@yahoogroups.com Sent: Sunday, November 02, 2008 3:59 PM Subject: photos Thanks for the photos of quinn, colleen. ...
Hey Karen,thats a fab idea to make cards out of all the children's artwork-go for it!! but when will you get the time I ask myself!! You are one amazing...
Hi Colin, Â Just had to say I was flicking around on the TV tonight and saw the Channel 5 report on Tilly, it was brilliant !!! she is looking really well and...
Don't feel useless Karen. You're Charlie's mom. What would he be like without you? You are a gift. It's ok you didn't get anything done. Catch the next...
Hello to everyone. Sorry to be so out of touch on this end. I have been in the hospital for three days and came home today. In the past 6 weeks I have had a...
Oh my gosh...I feel horrible for you Jennifer. Wish I could be there. We were planning on coming but it hasn't worked out as I had planned. I am so sorry you...
Hi All, Colleen, I am glad you found this group, Quinn is beautiful! You are from Ottawa? Was Quinn diagnosed there? I am in the Toronto area, it was...
Karen, Say Hi to Dr G for me! I met doctors last week at the ACR conference, and from my tally of what they said, these doctors from all over the world had at...
Colin, This was such a nice surpirse to see Tilly's article and even better to see her standing with her pink cane in her Brownie outfit! I am so glad to see...
Hello everyone, just finished reading all the e-mails. Wow, Jennifer I hope you are feeling better by now. You have worked so hard on the art fundraiser. I...
Dear Colin, Debra, Tilly and Oliver, I just finished your story. It brought tears to my eyes. These children go though so much. Tilly lookes adorable and so...
Karen  Thank you for your kind comments.  We will probably be at the NIH for the week of 16th November if anyone there?  Kind regards Colin ... From:...
Hi Colin and all the family, read Tilly's story -well done to her -she is sooo brave and her strength and courage are amazing-she gives us hope for Jack...lots...
Thanks for the warm welcomes, this has all been so uplifting. I must have missed something about the article with Tilly, how can I see it? Colin, I think it...
Colleen  Look's like we will be there from 18/19th November for a week, due to waiting for our US Visa's to turn up and hoping for a good deal from Virgin...
Colleen, Michael was 20 months when he was diagnosed. We are on our 3 year trip at the NIH now and he is still doing great so far. He has his LP and MRI...
Colin, Alex and I will be there the 10th for a week, It would have been nice to see you and Tilly again. I read the article and I’m not sure why the midwife...
Karen, Yes Quinn has been on Anakinra since she was Dx this past August and no, we have not yet been to the NIH...anxiously waiting! I'm interested to know...
Kate  I am gutted, we have had to change our plans to arrive around 18th November due to crazy flight price fluctuations.  Send me best regards to my mate...
Kate, I am so sorry to hear that you had a terrible bike fall, and a brain bleed at that! I hope you are recovering ,and don't worry about the fundraising for...
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