Dear All, I hope that Issac and Quinn have good visits at the NIH this week! I am thinking of you all. I have been out of touch lately,as I have been hard at...
Hi Karen,Before miranda was seen by the NIH, we went to Philadelphia Childrens Hospital and we were recommended to Dr. Goldsmith, he saw miranda for about 10...
Thanks Sheri! I will pass this on. ANother memeber emailed me his name too, so he must be really good. Karen ... Hospital and we were recommended to Dr....
Dear All, Thank you to everyone that has helped the NOMID Alliance ins so many ways this year, form getting the CAPS medical guide out to doctors in your area,...
Dear Karen, Kate and ALL !!! Â Happy Christmas to you all too ! have a lovely break and happy 2009 ! Â Hope all the children are well and looking forward to...
thanks karen congratulations to ethan we'll be watching the coverage with interest! louise ... From: sfokaren2003 To: nomidsyndrome@yahoogroups.com Sent:...
Dear Karen and all, Thanks to all that have found me on Facebook, and anyone else that is interested, you can find me as Karen Durrant of San Francisco CA. I...
Hi all, Sorry have been out of touch but have been busy trying to keep Jack out of hospital.He managed to stay home for Santa this year.He has been v unlucky...
so glad Jack could be home for christmas Merry christmas and a happy new year to all our nomid family Love from Louise ( tom in australia's mum) and family ps...
Aisling, I am so happy to hear that you and Jack got to be home for this Christmas, and enjoy the family too! I hope Jack stays out of the hospital through...
Louise, Merry Christmas and fingers crossed for you and all that there are no issues with getting the anakinra in 2009! We have tried to get their attention...
that's so great that seth is doing so well I hope eventually this treatment will be suitable for tom seth has been such a hero, first with the anakinra and now...
Hi all, unfortunately my poor lil Jack had to be admitted to hospital on Saturday with bronchiolitis... He has no broviac/hickman now so he has no iv...
Aisling, So sorry to hear that Jack is back into the hospital, and he is such a champ to have such a good attitude about things ! He is a very special boy. I...
sorry to hear of jack's latest challenge aisling you amaze me with how you seem to take eveything in your stride best wishes for a more settled 2009 louise ......
Hello, We just found you through the NOMID website. We are newly researching NOMID and honestly some of it sounds a lot like what our little girl has been...
Hello Tara, Welcome to the group, you'll find a lot of much needed support here. I'm pretty new myself as our daughter Quinn was diagnosed with NOMID the week...
Tara, Welcome, I am sorry that your daughter is facing is, but this is certainly the place to find support, advice and information. Her symptoms are...
welcome tara tom is 14 and has his nomid syndrome confirmed by genetic testing. anakinra has been a miracle treatment for tom i hope you get some answers soon ...
Dear Tara, Welcome to the group, and I am sorry that your daughter has a rough few years. It is good to get genetic testing, and they can do all the periodic...
Hi Colleen, I hope you all are doing well, and I am glad that your trip the the NIH was helpful! Did you get the box of stuff I sent awhile ago? Sorry I have...
Louise, Thanks and I think of Tom as a hero too, and his story has been an insipration to Seth. I am glad that Tom continues to do well, and had a great trip...
Dear All, Thanks so much to the Earnharts for their amazing fundraiser this Fall that raised over $4900 for The NOMID Alliance! I am so impressed with what...
Hi Karen! Happy new year to you and your lovely family. Our first trip to the NIH was a huge success, I was so impressed by the wonderful care Quinn received...
Thank You, Colleen, Karen A, Lousie & Karen Durrant,for the welcome and notes. To answer the questions you asked, our little girl just turned 3 a few weeks...
Hi all,and welcome to Tara-(my Jack is 3yrs and 5months old) Jack has been having a rough time in hospital.He worsened on Tuesday night -so much so I feared he...
Dear tara, You can all go to stay at the Childrens Inn as a family, or if you ant to only go down there with your daughter, that is ok too, if you can get help...
Colleen, Great to hear from you ,and that sounds like a perfect date for the fundraiser! As you are in New york state, and hour outside NYC there are a few...
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