| Aleds Guest Book
Please feel free to write in my Guest Book 
From: christina neate (christina9556@hotmail.co.uk) May 10 2010 hi i stumbled across ur sight looking up vacterl association i gave birth to my son charlie 3 weeks ago and i to didnt know half the problems he has and still dont know untill he has more tests done he has a colostomy bag too as he has an imperforate anus its really good to see ur boy looking so happy and healthy it gives me hope during this very hard time which im sure u know all about, keep ur site updated and all the best for the future  From: iphone firmware (robertdc_54@hotmail.com) Home page: http://iphoneawareness.com/firmware/ April 25 2010 Great website! :) From: zoe (zoe.reed3@btinternet.com ) April 16 2010 he looks like a very happy boy even though he has a problem. hope he is ok From: Owerri Egoaba nwa (owerri-egoaba-nwa@hotmail.fr) February 11 2010 Great indeed.Thanks Owerri Egoaba nwa From: David (daviscarlod4@gmail.com) Home page: http://debt.atspace.us January 21 2010 Nice site Thanks From: Alen Johan (alencjoh56@yhaoo.com) Home page: http://biz.byethost15.com January 3 2010 Very Interesting and nice site thanks From: Dane (dane534@gmail.com) October 13 2009 Nice site dane534@gmail.com From: Aoife loughlin (Aoifeloughlin@ymail.com) July 28 2009 Hi Aled hope you settle into your new home well when you sent me the letter i was suprised you lived in devon but whith that letter i will be able to talk on the tell and send you letters From: Movatec Meloxicam Home page: http://www.norxshop.com/buy-movatec.html July 24 2009 Nice site, keep it up. From: neil burt (neil1andjo2@blueyonder.co.uk) May 29 2009 Hi aled just had to say that i really enjoyed meeting you, i think your a great lad with a brilliant personality!!! hope you enjoy your new home eventually!!! All the best mate neil,jo,madeline and grace. From: Deniel (19dcns@ymail.com) Home page: http://biz.110mb.com May 22 2009 Nice site Thanks From: Tannya (toni4ever2002@yahoo.com) April 28 2009 I was born in 1971 with Vacterl syndrome not knowing the actual diagnosis until 1993 when I found out I was pregnant with my first child. I was curious about the facts of my vacterl association because of the findings and b/c of personal complications as I grew older. Doctors in 2009 in this area seem to discard the syndrome b/c it is not widely studied. Recently I have had a smaller bowl obstruction and the doc. decided to push a tube down my nose and through an unstable esophagus w/o listening to my forewarning of the problems and repairs I have had. Needless to say, they found blood in my stomach said I needed a transplant of one of my organs (at 38 mind you) and rusal of surgery b/c I had massive scar tissue ranging from top of liver to bottom of pelvic. By the way....the report says ''vacterl is stable''. Funny how they came up w/ that since everyone in 4 hospitals (including doctors) was asking me what ''vacterl'' was. I know I am one of the earliest found cases still alive and deamed a hopeless case for help or living w/o bigger complications in the future including paralysis before the age of 40. This is b/c the syndrome includes a ''fused'' c-spine at birth. My whole purpose in this discussion is finding out how I can help the future generations in either a cause of this syndrome or a more stable outcome than mine.... The first time I was seen at a medical facility doctors studied me for the unborn child I carried and I described the feeling of being one of the wonders of the world...pictures were taken, including polaroid, ex-rays and catscans. As for my children...all were 3 were physically and mentally in tact (thank GOD). The complications I had gone through were unbareable and count each child as a blessing. I keep hearing there might be a medicine given to pregnant women ''unknowingly'' that causes birth defects such as mine. If this is the case, why are children still dying or having difficulties of life or death matters w/ the same syndrome today? What is the FDA or Medical administration not able to fix this ''clitch''? I have looked for some simularities and cases and to my findings this does'nt seem a case of environment. To anyone else researching this for whatever the case....please contact me at toni4ever2002@yahoo.com Thank you, Tannya From: grandma April 15 2009 Dear Sixpence Hope your being a good boy for Mum and DAD I must say how lovely the flowers are and also my letter.I have put it on the photo of little Nan.So i can see it all the time.Thank you very much,it will not be long before I go on my holiday to ITALY.Must go got to get my dinner as im hungry bye for now loads of love hugs and kisses. LOVE TO MUM AND DAD Grandmaxxxxxxxxxxxxxx before From: Kayleigh April 15 2009 hi aled how are you? im just helping grandma work her laptop, hope you had fun with tara over the weekend. lots of love kayleigh xxx From: Oyunlar Home page: http://www.flashoyun1.com March 31 2009 Great Site... From: Vikki (viks@postpals.co.uk) Home page: http://www.postpals.co.uk March 29 2009 Hi Aled, I love the new PowerRanger website you've got, its very cool! From: Grandma March 20 2009 Hi Sixpence, Hope you are ok, bet you enjoyed yourself on thursday. Are you looking forward to the party next week? What brilliant news about your reading,very well done keep it up. Hows Mum is she feeling a bit better and is Dad being a good boy like you.I Will try again to see if I can send this to you,so bye for now loads of love hugs and kisses to you,and love to mum & Dad. Grandma.xxxxxxxxxxxxxxxxxxx From: Tracy R Home page: http://www.caringbridge.org/visit/margaretreed1 March 17 2009 Aled, you have one awesome webpage. This is too cool with the Power Rangers. I bet you like to watch them. From: David (david@gmail.com) Home page: http://www.musclepacked.com/halotestin-halobolic.html March 17 2009 Great site From: katy (katyvw@hotmail.co.uk) February 25 2009 hey aled How are you cousin?? what you been up to?? i'm at uni now and i love it...when i get the chance i will come down and see you. sorry i missed you at half term i was going to come up home but i had a week full of lectures so in the end auntie hazel and uncle nigel decided to come down and visit me instead. so all in all i am enjoying uni life and getting used to living away from home, it was hard at first but i'm used to it now. a little birdie told me that grandma was going down to visit you soon. hope mummy and daddy well and safe...send my love to everyone and i will hopefully see you soon, we will have to plan a mini vacation sometime. bye for now and speak to you soon All my love, hugs and kisses Katy Xx* From: Mike Lin (mike_d@yhaoo.com) Home page: http://debtcons.freehostia.com February 10 2009 Nice Site From: Lisa Wuollet (schwablisa@hotmail.com) February 8 2009 Hello Aled! We had fun looking at your nice website. It is encouraging for me to see how wonderfully you are doing as I have a 4 month old son who was born with VACTERL association. We are enjoying him at home now and are thankful that his only reminder of the NICU days is his gastrostomy tube. He was born with bilateral club hands; missing the radius and thumbs on both sides. We are having a difficult time trying to decide if we should have the pollicization surgery done one one, both or either hands. Tough things for us Moms and Dads to decide. We look forward to guiding our bright little wonder through life and hope he's as cheery as you! Lisa From: valerie simms (valerie955@btinternet.com) January 29 2009 hello my love thinking of you you have the same name as my son he is abit older thenyouhe is 12 and likes skate boarding what do you like not been on your page yet but i will send you a card love valerie From: John Wood (john.wood@stivesdirect.com) January 28 2009 Hi Aled, I too have problems with my hands and thumbs, promise me never let your problems get in the way of your hopes and dreams. It's amazing how we adapt and do the things ''normal'' people do (we just do them differently that's all!!) You know what I mean.. Take care young man and never give up. Best wishes John From: Chris Wenger January 22 2009 Sorry, I meant to say I am working towards becoming a 'speech therapist', not a 'speech therapy'. Whoops! From: Chris Wenger (cwenger123@hotmail.com) January 22 2009 Hello, I am currently working on my Master's Degree to become a speech therapy, and part of my assignment was to research a rare disorder. I chose VACTERL, did a google search, and came by your site. I've learned a lot...but I think the thing I learned the most is the importance of a caring family. Just wanted to say, great site and I look forward to following the updates on the journey. Chris From: jean soikkeli (jean.soikkeli@netti.fi) January 13 2009 Hi we have been following your progress from here in Finland. Happy new year. Our son was born in 2003 with vaters. From: Aoife (aoifeloughlin@ymail.com) January 12 2009 Hi Aled, nice to say hello to u the cold going round our house mum got no voice dad had something in eye and cathal was sick! lucky enough I was okay phew love Aoife From: daniel lundberg (dz.lundberg@gmail.com) January 11 2009 niiiiice! From: Andy Baldwin January 1 2009 Hi Aled, I'm a student doctor studying for my final exams. I wanted to find out a bit more about VACTERL because I couldn't remember all the things it stood for, so I typed it into google and found your web site. It's brilliant! I really enjoyed reading the 'all about me' section and leant loads. I'm sure it will help with my exams, so thank you very much! Happy New Year and best wishes for 2009. Andy From: Hayley T December 23 2008 Hi Aled Thank you very much for the christmas card. I hope you have a lovely christmas and a happy new year! Lots of love to you xxx From: nora (norac@email.arzona.edu) December 23 2008 hey Aled! I came across your website today, and I was doing Research on VATERS. I am 20 year old Universrty student who also has VATERS, I would love to be a pen friend. From: Nicky W (kicky222000@yahoo.co.uk) December 21 2008 Dear Aled, Have a wonderful Christmas! Love from Nicky W xxx From: Amanda (jessiesmum169@hotmail.com) December 5 2008 I found the website! Der me! What a handsome boy!!! i cant beleive it your hand looks exactly the same as Molly's except she has 4 fingers! I will make sure i bookmark your website now and keep up to date on your progress God Bless Amanda From: Amanda (jessiesmum169@hotmail.com) December 5 2008 Hi my name is Amanda. My daughter Molly was born in Maitland NSW 16 May 2006 with Vacterl. She had an ASD (closedon its own) a VSD (closing on its own) and a PFO (closed on its own), hemivertabrae and absent sacrum, anal atresia (has not been repaired yet as anatomy is extremely complicated, doctors are unsure if it will ever be able to be repaired), a pure oesophagul atresia (repaired at 3 months old. We had to wait 3 months for the 2 ends of th oesophagus to grow closer together before it could be repaired.), crossed fused ectopic kidney, unusually small bladder (the last 2 lead to many many urinary tract infections), an absent right thumb, absent right radius and some of the bones in her right hand are also absent, a vaginal atresia, half a uterus and only one functional ovary. Also her bowel is attatched to her uterus. She has a colostomy and ileostomy and a gasterostomy tube to receive feeds overnight. I am so glad i came across your guest book....i found it in google but for some reason cant find your website....is that weird??? Anyway i just wanted to say i would love to hear from other people with VACTERL or parents of children with VACTERL or just anyone who's lives have been touched by this syndrome, especially people in Australia, too often we feel like we are alone because there is noone locally with the syndrome and therefore noone that really knows what we are going through. Thank the Lord for the internet. I'd love to hear from anyone!!! God Bless Amanda From: Paul Pullen (sm_biz1108@ymail.com) Home page: http://merchantaccount.110mb.com November 30 2008 This is really a nice site Thanks From: tyt November 6 2008 From: nahomy (nahomyonefour@yahoo.com) November 5 2008 MyHotComments From: Aoife lilly joan loughlin (www.siobhan.loughlin@btinternet) October 28 2008 I just went thourgh your messages and I have seen how many are from me. WOW!!!!!!!! From: Aoife loughlin (www.siobhan.loughlin@btinternet.com ) October 28 2008 Hello Aled,I hope you are feeling better from your tummy bug.I like the idea of going out before christmas !!!!!!!!!!! Because then we can all meet up! From: john (godluvsme1976@yahoo.co.uk) October 28 2008 nice From: Aoife (Siobhan.loughlin@btinternet.com) October 22 2008 Hi Aled have not been on the the website for a long time.I hope we meet up quite soon!!!!!But I will text you on both websites and the Vacterl acosiation. Good talking to you !love Aoifexxx From: rob shasta (robertshasta2006@gmail.com) October 11 2008 hey everyone! i made it! i love this palce! From: Joe (joespooner@comcast.net) September 27 2008 Hi Aled. Great site From: Walter Olsen (walter.olsen35@gmail.com) September 21 2008 Hi Aled, I just wanted to say hello and to let you know that your web site is very good. You're a very brave boy, and an inspiration to the many children out there in the world with VACTERL! Thank you for creating this web site! From: James (jameskoffi_12@maga.com) September 16 2008 I don enter this place ooooooooooooooooo From: Rob Harry (technicalrob@gmail.com) August 30 2008 I was looking a the razor system and saw your site! Great job. Hope all is well, and you are an inspiring young man! Your new friend from Alabama USA. Rob From: me August 27 2008 wow!!!! From: Kayleigh August 20 2008 Hello, I love your new power rangers theme its very cool, hope you are all ok. It was nice seeing you at the weekend, shame you couldn't beat Stuie up though lol oh well theres always next time anyways take care love Kayleigh xxx From: Paul (smiffy6969@razorcms.co.uk) Home page: http://www.razorcms.co.uk August 1 2008 Hi Buddy, my present, hope you like the new site, lets hope your daddy can find it easier to update, hope you like the power rangers theme, I did it myself. see you in a few weeks Paul www.razorcms.co.uk flat file CMS Please tell me what you think of my website |
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