Hi, I e-mailed Michelle Grifin through this group a few days ago, but am not sure if it worked. Michelle, if you did not get the e-mail post I only sent to...
Hi all. Really, I don't know how to begin. Perhaps from the beginning. My daughter, has been diagnosed CINCA syndrome years ago. She was born normal, and after...
Dear Rob, We are extremely sorry to hear that your daughter has this condition. However, having followed the NOMID Group correspondence for years, at last we...
David Campbell
D.Campbell@...
Mar 8, 2005 5:53 pm
600
Dear Rob, Similarly to David Campbells reply to you, our little boy has similar symtoms in the fact he has been diagnosed as mild CINCA syndrome by Prof Woo at...
Dear Karen, Many thanks for wishing Molly well. From what you say below, your son's clinical symptoms do seem to resemble hers in some ways. However, she has ...
David Campbell
D.Campbell@...
Mar 9, 2005 11:58 am
602
Hello, My name is Paola Villagomez, my little brother was diagnose with NOMID syndrome and has been going to the NIH since May 2004. I would like to know if...
Paola, Por favor de das el numero de tel. mio a tu mama... 847.91.2432. Att. Dorelia Paola Villagomez <paolavillagomez_09@...> wrote: Hello, My name is...
Paola, You could also give me your mom's number, and I can call her... :) Take care. Dorelia Paola Villagomez <paolavillagomez_09@...> wrote: Hello, My...
Dorelia, You have been on my mind these couple weeks. If you have a moment I would really like to hear how your trip to NIH went. I am sure you are still ...
Hello to all! Boy, I don't know what happened,but we are back on the site. Kate doesn't know either! Oh well, I'm back and things are ok. Miranda is doing ok,...
Sherri, I don't think that I've seen you on this site yet. I'm pretty new to the group. Our daughter, Kayla, has recently gotten diagnosed with NOMID. We...
Hi Dorelia, Yes we will be there until the 1st or the 2nd of April. I am always excited to meet another parent, it's amazing how much we all connect. At least...
Hi Sherri, We'll be looking forward to meeting you. Our daughter Kayla is 16 months old. Miranda is 10? Right? How about your other kids? I will definitely...
Hello everyone. Next week will be our second time at the NIH, but our first on an "Angel Flight". Can anyone tell me what to expect? Anything I should/should...
hi all I know what yow are all going throw. I have a 9 1/2 year old that has nomie to.Also i have nomid to so i know what it is like with it. If anyone want to...
hola Dorelia Soy Maria Villagomez mama de Salvador mi hijo fue diagnosticado con el syndrome de nomid en Noviembre de 2003 pero primero fueron 3 anos de...
Hello everyone, please could you take a minute to read are e-mail as we are new members. Our names are lisa and colin, and we have a son of 14 months who has ...
Hi there, I dont really know where to start, you can see my little boys posting on the nomid site set up by John and Kate Barton. Our little boy is 3 next...
Dear Lisa and Everyone, I am so glad to hear that the NIH will help you! I have been thinking about you ever sice we last talked, and have not had the time to...
Hi lisa, colin and fynley, my name is melhoney and i live in London. i have a daughter called Holly with c.i.n.c.a. my parents live in somerset and we will be...
Thankyou for all your support and replys to our e-mail that we posted. We have learnt so much and a special thankyou to karen durrant, Colin bailey, Karen...
Hello, My name is Sherri and I have a daughter with NOMID. I am so sorry to hear of your little one having so many problems, I know exactley what your going...
Dear Sherri, Jim and Family, and also Lisa, Fynley's mom, So good to hear from you all! I have been wanting to write you for awhile, and I know I tried when...
Hi all, sorry for not being touch these past few months.We will be at the NIH tomorrow to. Alex is now on the max dose of the kineret and although he has more...
Hi Karen, I just wanted to say that if you want help in the UK regarding a charity or fundraiser for CINCA/NOMID I would be more than happy to help set it up....
Dear All My daughter and I are giong back to the nih on July 31-6 of augst. if anyone is going toere that time let me know .mayve we can get together .I'm a...
Hello to all from Michigan, I feel almost as if I shouldn't be on this site as I have not been online much with all of you. But Erika (my grandaughter) will...
Hi all, It was wonderful meeting Michelle and Karen this past week. And I know that Alex enjoyed playing with both Seth and Kiren.We will be leaving the...
Hello Everyone, Karen and Kate, I am so glad you guys were at the NIH. It is such a great thing to be able to talk to other parents. Kieran had such a good...
Michelle, thank you for your wonderful words,and Kieren I am so very proud that you are doing your own injections, keep it up.Michelle the reasons that we...
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