First Name :   Alecia email address :   happy521@pacbell.net City, Country :   Simi Valley, CA Message :   I hope everyone had a great Mothers DAY! More space :    First Name :   Nancy email address :   ngroat47@hotmail.com City, Country :   Grabd Haven, MI, USA Message :   Hi all, Hows life going. Just stopped by to say hello and God bless. Nancy 4-29-05 More space :    First Name :   John email address :   carmody@bigpond.net.au City, Country :   Sydney, Australia Message :   Helen, what a great site. It is a credit to you and all that have contributed. It is easy to use and so bright and positive. Good luck and keep up the good work. More space :    First Name :   Jason email address :   pie.faye@btinternet.com City, Country :   Yorkshire, UK Message :   Many thanks for such an informative and supportive site. My son has only been diagnosed recently and i have been hunting out information since. I found a lot here. Many thanks More space :    First Name :   Alecia email address :    City, Country :    Message :   This is to Latoya, I have emailed the address that you had left and cant seem to get to you. Please send me your address again. Thanks. More space :    First Name :   Nancy email address :   ngroat47@hotmail.com City, Country :   Grabd Haven, MI, USA Message :   Hi all, Just stopped in to say Hello. I am still fighting a stubborn viral infection but other than that am ok. Hope you are doing well. More space :    First Name :   Becki Matthews email address :    City, Country :   Edmonton, AB, Canada Message :    More space :    First Name :   Latoya Walter email address :   toya_walter@hotmail.com City, Country :   Norcross US Message :    More space :    First Name :   Teri Taylor email address :   Taylor.Ken@worldnet.att.net City, Country :   Clovis, CA. USA Message :   Hi Alecia, Just wanted to let you know that the IVIG infusions that we have added to Mikes treatments have brought his albumin levels up higher than they have been in 6 YEARS!! We are very excited about this and Ill call you soon to discuss further. Hop More space :    First Name :   Kerri email address :   kerri_l@msn.com City, Country :   Newcastle, Australia Message :   GREAT site & good info!And info IS hard to come by. I am an adult recently diagnosed with primary IL. NOW lots of health things over the years are making sense. Keep up the good work. More space :    First Name :   CJ email address :    City, Country :   HARRISBURG PA USA Message :   MY GRANDSON HAS JUST BEEN DIAGNOSED WITH HAVING IL. YOUR INFORMATION HAS BEEN A BIG HELP IN EXPLAINING THINGS. THANK YOU. More space :    First Name :   elsa email address :    City, Country :   italy Message :   god bless you for this marvelous work More space :    First Name :   alethea email address :   laredo@xtra.co.nz City, Country :   New Zealand Message :   Hi Helen, Web page looking great. This time I had success opening it. Well done its a great source of information. Cheers Alethea More space :    First Name :   Juergen email address :   jring@sasktel.net City, Country :   Regina, Canada Message :   I love your site. More space :    First Name :   Teri email address :   Taylor.Ken@worldnet.att.net City, Country :   Clovis, CA Message :   Hi Alecia, Happy New Year! Ill call you soon to see how your doing. Did you link the new IL site at: http://lymphedema.omno.org/thesite/lymphedema_intestinal_lymphangiectasia.htm More space :   Its another great way to conect with the few IL patients out there. Best wishes. Teri and Iron Mike Taylor First Name :   Helen email address :   heleneavis1@optusnet.com.au City, Country :   Sydney, Australia Message :   Hope everyone had a great Christmas and looking forward to a sensational New Year. Try the Roasted Citrus Turkey Breast - it is fantastic. More space :    First Name :   Nancy email address :   ngroat47@hotmail.com City, Country :   Grabd Haven, MI, USA Message :   Hi Mary Alice, Thank you for signing the guest book. I look forward to hearing from you again. Merry Christmas and Happy, peaceful New Year. Nancy More space :    First Name :   Mary Alice email address :   foreveryounghealth@earthlink.net City, Country :   Troy, NY USA Message :   Nancy Groat shred your address with me. She has been a friend and inspiration since wemet in college in the 60s.Despite her ongoing health problems she has More space :   served as an RN and pastoral counselor. Your quote from Margaret Truman defines Nancys life. May it be long and happy and free from fear. First Name :   Nancy email address :   ngroat47@hotmail.com City, Country :   Grand Haven, MI USA Message :   Once again I wrote too much. What I was thinking of is a way of being able to communicate like the TPN support site. I am not computer literate or I would start a list - any thoughts? Nancy More space :    First Name :   Nancy email address :   ngroat47@hotmail.com City, Country :   Grand Haven, MI, USA Message :   Hi Helen and Alecia, Was just thinking about the site and wondered if you are familiar with caringbridge.com. Teri and Mike from CA have one. It would be nice if we could do a similar thing, more that the guest book, to keep updated with each other. Or More space :   Wishing you and yourfamilies the best of the holiday and good health in 2005. Nancy First Name :   Becki email address :   nswitzer@flintenergy.com City, Country :   Edmonton, Alberta Canada Message :   My 3 yr old daughter was diagnosed recently and it was nice to find a site about kids, not animals. Her whole lymphatic system is abnormal but it pools in her gut. If someone would like to email me back it would be appreciated More space :    First Name :   Alecia email address :   happy521@pacbell.net City, Country :   California, USA Message :   Happy Thanksgiving to everyone! I am truely thankful for being able to meet so many special people on our journey with IL. Youre not alone. More space :   And thank-you Helen for being a part of my life. Big Hugs. First Name :   Nancy email address :   ngroat47@hotmail.com City, Country :   Grand Haven, MI USA Message :   Happy Thanksgiving to all my new friends at Little Leakers. I look forward to hearing from you. Please be patient as my e-mail is currently taking a vacation!! Nancy More space :    First Name :   Teri email address :   Taylor.Ken@worldnet.att.net City, Country :   Clovis, CA Message :   Hi Alecia, Good talking with you on the phone today. Mike and I look forward to meeting you over the Christmas holidays! Happy Thanksgiving! Teri and Mike Taylor More space :    First Name :   bronwyn email address :   willbron@bigpond.com.au City, Country :   sydney, australia Message :   Hi Helen, I think of you all the time and was very interested to learn more about Bradys illness. Mostly I love how you remain positive whenever I speak to you. Go girl! More space :    First Name :   liz email address :   etagla@seven.com.au City, Country :   sydney Message :   thinkyou of you and admire you. More space :    First Name :   Leigh email address :   leigh@omegamedia.com.au City, Country :   Sydney Message :   This is a really great little site and no doubt SO helpful for those struggling for a diagnosis or struggling soon after. well done! More space :    First Name :   Karen email address :   karen.phillips@lthtr.nhs.uk Comment :   Hi I am a Sister on a childrens ward at the Royal Preston Hospital in Preston, Lancashire, England. I just wanted you to know that your email had been sent on to me by our PALs team here. I am the lead nurse for Patient and Public Involvement in the chil First Name :   ricky email address :   par@alphalink.com.au Comment :   Hi Helen, thanks so much for the opportunity to read info about Bradys illness. It was amazing!!! and informative. Well done to you and Alecia for all your efforts. Hope to talk to you soon. Love to all the family. xxx and Scully. Love Ricky. xxx First Name :   Shoma email address :   shomad@chw.edu.au Comment :    First Name :   John Knecht email address :   jknecht@attglobal.net Comment :   Keep up the good work of helping others with this disease. We have family with rare genetic diseases as well and only through support do things get easier. Our love to all. John, Cina and the Gang. First Name :   Tracey email address :   sprite-jake@newave.net.au Comment :   Great site! My 3yr old Jai was diagnosed with LI at 6mth.I look forward to swapping some tips First Name :   grant email address :   grant@growthrealty.com.au Comment :   Hi Helen, This is a wonderful site to help peolple understand your childrens condition. It makes it so much easier to understand what it is and feel comfortable to ask the kids and their parents any questions. Thank you for sharing it with me. You hav First Name :   jonny Taitz email address :   jtaitz@doh.health.nsw.gov.au Comment :   really enjoyed the website. I think it can become a valuable resource for all patients with IL. First Name :   jean email address :   bruening@comcast.net Comment :   Great information - just been dx with primary intestinal lymphangiectasia, although the first severe symptoms appeared at the age of 16 (I am now 38). Hoping to find other adults with this condition. First Name :   Teri email address :   Taylor.Ken@worldnet.att.net Comment :   Hi Alecia, The web site is looking good! So glad to have this as a way to connect with other IL patients. Talk with you soon! Teri and Mike Taylor First Name :   Nancy email address :   ngroat47@hotmail.com Comment :   Sorry, the rest of my comment was lost - surgery. I am really pleased to see this site as I have only met a few people with this rare condition. Thanks Teri for alerting me to it. Nancy First Name :   Nancy email address :   ngroat47@hotmail.com Comment :   I have IL, was born with a fairly complex condition and am now 54 years old. I used TPN (total parenteral nutrition) with IV central line for 10 years to get over a particularly hard time. I have been off for 2 years because of a yeast infection and heart First Name :   Nancy email address :   ngroat47@hotmail.com Comment :    First Name :   Jennifer email address :    Comment :   This is a fabulous web site! What a great resource. I am so impressed with all your hard work Alecia. Dylan looks great and I know he will help other families. First Name :   Anna email address :   banay214@cfl.rr.com Comment :   Alecia, I am so proud of you for starting this site and for getting the information that you so desperately searched for in the past out to others. What an accomplishment!! First Name :   Teri email address :   Taylor.Ken@worldnet.att.net Comment :   Hi Alecia, Thanks for posting Mikes Story on the web site. Hope you are doing well. Talk with you soon! Best wishes, Teri and Mike Taylor First Name :   Kylie email address :   whittenk@sesahs.nsw.gov.au Comment :   Looking good girls. First Name :   Teri Taylor email address :   Taylor.Ken@worldnet.att.net Comment :   The web site looks great! So glad to have a way to contact some other patients with this rare illness. Our 10 year old son, Mike, was diagnosed at the age of 3 with Intestinal Lymphangiectasia. He recieves infusions of albumin and calcium every 2 weeks at First Name :   Teri Taylor email address :   Taylor.Ken@worldnet.att.net Comment :   The web site looks great! So glad to have a way to contact some other patients with this rare illness. Our 10 year old son, Mike, was diagnosed at the age of 3 with Intestinal Lymphangiectasia. He recieves infusions of albumin and calcium every 2 weeks at First Name :   Jane email address :   freeman_home@hotmail.com Comment :   The kids are wonderful! First Name :   Coni email address :   csbrown@pt.lu Comment :   Helen beat me, oh well. Still good luck and let me know if you need help or input. First Name :   Coni email address :   csbrown@pt.lu Comment :   I hope I am the first one signing! Hopefully there will be a lot of response from everywhere, I already sent Elsa the link so a start has been made. Will join soon. Coni and Co. First Name :   John email address :   jdesilva@pathcom.com Comment :   My daughter Alison De Silva suffers from this rare disorder and I am excitited about this website. Keep up the good work. First Name :   Helen email address :   heleneavis1@optusnet.com.au Comment :   I want to be first to sign the guestbook - the site looks awesome.