Guest guest Posted December 23, 2004 Report Share Posted December 23, 2004 Patie, Happy Holiday to you too! Merry Christmas & all that .. Joan Patie <lilcia2001@...> wrote: DEAR FRIENDS, I WOULD LIKE TO WISH TO ALL OF YOU LOTS OF HAPPINESS THIS CHRISTMAS, LOTS OF DREAMED GIFTS, BEAUTIFUL TREE, GOOD MOOD AND LOTS MORE. AND IN A NEW YEAR - MAY ALL YOUR DREAMS COME TRUE ALWAYS YOURS PATIE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 24, 2004 Report Share Posted December 24, 2004 have a blessed holiday! with love to all- bonnie goodhart Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2006 Report Share Posted July 16, 2006 There is the Make a Wish organization also....I don't have their web site... Pattie might know... Congrats on the new furnace stuff tho.... Re: wishes Valarie, That is awesome about the furnace, etc.!! I did a wishes for kids for Tim through the Modell Foundation - he got a laptop computer for ivig days. They also do vacations, etc. Here is the website: _http://www.info4pi. <http://www.info4pi.org/index.cfm?section=john_> org/index.cfm?section=john_ (http://www.info4pi. <http://www.info4pi.org/index.cfm?section=john> org/index.cfm?section=john) Let us know what happens!! Pam Tim - cvid age 16 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2006 Report Share Posted July 17, 2006 This is a very special opportunity for a family to have, and to enjoy, it is a once in a life time opportunity, to fulfill a dream for a child that has been struggling, fighting,living with an illness for so long.... I am grateful we were approved, and hope this trip creates the memories I am hoping for.... I am so happy for you Kathleen! I am tearing as I can feel your emotion. I'm sure it will create those memories. Please share a bit with us when you return. Janet, mom to Brittany CVID age 15 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2006 Report Share Posted July 17, 2006 Re: wishes I hear you, as moms our perception and views are very different from anyone elses.. including doctors at times... I am not sure what constitutes life-threatning illness.But the dx that got us the wish, is one I would not wish for at all.. it is a progressive, and fatal disease without a cure.... I know that their are some other wish -granting organizations that help familes who ;s children live and struggle with chronic medical conditions, and their are also private sponsers, who also help out.. with vacations, home stuff, playgrounds, etc... . Thank You ... I hope Conan loves his trip,,,,, and the chance to see Spider- Man Warmly Kathleen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2006 Report Share Posted July 17, 2006 > > We were just granted a wish through MAW... the criteria is for children > under the age of 18 with life threatening illnesses or conditions... > We were not granted our wish based on Conan's CVID, or pseudo- > obstructions, GERD, Elecare only for feedings... it was based on his > MITO dx, along with all the rest...our Neurogeneticist was who referred > us.. > There are other organizations out there that can help a family obtain a > wish.. MAW is just one of them.... and have been fabulous to us.. > > This is a very special opportunity for a family to have, and to enjoy, > it is a once in a life time opportunity, to fulfill a dream for a child > that has been struggling, fighting,living with an illness for so > long.... I am grateful we were approved, and hope this trip creates the > memories I am hoping for.... ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ This is Great Kathleen!! In 2002 at the age of 10 Blake was also granted a MAW Trip. He had been so sick from 1997 to. 2001 & stayed in the hospital more than he was at home. One yr....in 2nd grade, we were told to remove him from the Private Christian School we were paying for him to attend after he had missed 112 days out of 180 due to being in the hospital (At that time, was sooooo hard headed tath he had to keep paying to keep Blake on the roster!!! He knows now how dumb it was...if only he had just put laek in the public system & the Dr. could keep him on homebound til he got better......) due to Osteomyelitis in the Temporal Bone of the ear His CVID with Complete T-Cell Dysfunction did not allow his ear to heal properly. He wound up on 10 different antibiotics in a 2 yr. period. All IV!!! Finally after having the Radical Mastoidectomy & the bone at the base of the skull being " scraped " to paper consistency, it somewhat healed(still has issues). Blake has NO hearing in the Left ear due to this surgery!!! Blake also has a rare Blood disorder. he produces blood clots instead of free flowing blood!!! he is on a mega dose of Lovenox 2 X's a day. However it was his Immune disorder along with the Blood Clotting disorder that he got to go to Disney. But the one thing the Coordinator asked Blake, " Do you know the seriousness of your disease? " Blake told her he did & then added, " I know I can die at anytime from EITHER disease! " Where is Conan wanting to go? I am sure his little wheels are turning daily!!! Blake first wanted to go to NYC & Climb up the Statue of Liberty. He wanted to do something I had done when I was in 3rd grade(I was born in NJ & lives on Staten Island straight across from Lady Liberty & as a 3rd grader got to climb to the torch with my classmates!!!! But in the end, the Dr's said No due to all that was going on with the 9/99 issue. Blake settles on Walt Disney World!!! We had a BLAST!!! It was a time to forget the sickness, but a time to reflect on the Grace of God for Blake still being here to take the trip!!! Good Luck & I sure hope you can create lasting memories......I know we did!!! {mom to Blake, 14....CVID with Complete T-Cell Dysfunction, SDS, Asperger's Syndrome, Genetic Prothrombin Defect, Protein C & Protein S Deficiency, Severe Asthma, GERD......soon to be an 8th grader...... & Thinks he knows EVERYTHING....lots left to learn!!!!} http://www3.caringbridge.org/sc/blakester Come & Experience the Greatest Adventure of MY lifetime!!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2006 Report Share Posted August 10, 2006 Awesome, awesome, awesome. Please tell us all about it when you get back. I have some articles about Why Make a Wish on our family website and our boys MAW stories www.shwachman.50megs.com <http://www.shwachman.50megs.com/> if anyone is interested. Have fun and share the details when you get back!! Peace Be With You, Pattie A True friend knows your weaknesses but shows you your strengths; feels your fears but fortifies your faith; sees your anxieties but frees your spirit; recognizes your disabilities but emphasizes your possibilities. ~ Arthur Ward Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2006 Report Share Posted August 11, 2006 Terri, Thank you for sharing your experience with us! I can't wait to hear how your trip goes! Take care, Mom to Conner (12, unknown combined immune deficiency, lymphadenopathy, asthma, Hashimoto's disease and resolved adrenal insufficiency), Hayden (12, unknown immune deficiency, IBS and moderate hearing loss/aided), Evan (12, unknown immune deficiency, asthma and mild hearing loss/unaided), and Kelsey - (10, unknown immune deficiency and asthma) Please visit us at www.caringbridge.org/in/connersmith Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2007 Report Share Posted May 12, 2007 hope you have a nice mothers day too-you deserve it- charlotte ************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2007 Report Share Posted May 12, 2007 Happy mother's day to all the mothers and you too Jeanne. Lorraine Thanks.you too lorraine. -------------- Original message -------------- From: " jbmistletoe " <jbmistletoe@...> Hi all, wishing everyone a happy mother's day. Jeanne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2007 Report Share Posted May 12, 2007 > > hope you have a nice mothers day too-you deserve it- charlotte > > Thanks, you too. Remember all your kids are with you in spirit. > ************************************** See what's free at http://www.aol.com. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2007 Report Share Posted December 16, 2007 Thank you Roni, I wish the same for you. I always enjoy your posts. Venizia -- In hypothyroidism , Roni Molin <matchermaam@...> wrote: > > My holiday wishes for all of you are: > > Health, Happines, Fun and Much Joy! > > Love and Hugs, > > Roni > > > --------------------------------- > Be a better friend, newshound, and know-it-all with Mobile. Try it now. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 2010 Report Share Posted December 23, 2010 I wish you all Merry Christmas. STAVROS from Greece dxd 1996 Gleevec from 2002 Quote Link to comment Share on other sites More sharing options...
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