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...
Aisling, We will keep you all in our thoughts and prayers. You must never get your suitcase fully unpacked and stored away, which is so sad. I am glad that...
Hello to everyone out there! We have a daughter who just turned three and has NOMID. We've been going to the NIH for over 2 years and I am still feeling...
Hi there Heidi and welcome. My son is 3yrs and 5 months old.He has Down Syndrome,Cinca syndrome and has cardiac defects and chronic lung disease so things are...
Dear Heidi, I'm Eline's father and we live in the Netherlands [Holland] Welcome to our group and feel free to contact in any way! I have to respond to your...
Hello Heidi, I'm Colleen, I see Aisling already mentioned me as I do have MAJOR feeding issues with my 17 month old daughter Quinn. Although Quinn presented...
I just wanted to say hello to everyone. It seems I have been out of touch for a few weeks. I have noticed some new people in the group. Welcome and I hope that...
Jennifer, and all, I too welcome all the newcomers, and am so happy to have this group out here on the internet. I am more and more touched by the genuine...
Hello all, Â I haven't wrote for a wile. I just wantedtolet everyoe know that Tiffanie is still doing extremly well. I havebeen doing a little better but i...
Hi all I got this email today from the pharmacist at Tom's hospital. Hope everyone else has a similar good outcome! "Just to let you know that I spoke with the...
Just want to let you all know that my precious Jack is home from his last stint in hospital for the last week-doing well. Thanks for all your support. Aisling...
Aisling, I am so thankful! We will keep him in our thoughts and prayers. Tomorrow I put my eldest, Ethan, on the plane to DC to sing for the inauguration! I...
Good news Aisling! Hope you all get to stay there for a good while... I wish I could reach through this screen and hug you both. Take good care. Colleen and...
I am so happy little Jack is home. I pray that he goes from strength to strength! You are an amazing Mother. IÂ admire and salute your courage and fortitude. ...
Wowee Karen you must be soooo proud of your big boy-He is great and what an honour to be asked to go there-I will be looking out for him! As Joan said it is...
Hello to all. I have a question for you all about the Anakinra. What understanding do you all have on how the Anakinra should help in the area of joint...
Jennifer, i can't help but just wanted to say I'm sorry this symptom is not controlled. Tom does not appear to have any ongoing joint problems but before the...
Jennifer, I wish that they could help you and Hallie, and I am sad to hear that after all that you have gone through that your still have no clear answers. I...
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