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| Name: | wildman |
| Email: | wildman24_48@hotmail.com |
| HomePage: | http:// |
| Where are you from: | U.S |
| Comments: | you are a very strong boy todd. fight until you win. there is no second place todd. you are the winner. i salute you and all you have been through,however,this is a sad story to hear. wildman |
| December 4, 2005 16:07:49 (GMT Time) |
| Name: | Jennifer McCormack |
| Email: | letstalk_k.d@hotmail.com |
| HomePage: | http:// |
| Where are you from: | Canada |
| Comments: | Thank you for sharing Todds story. My son too was diagnosed with K.D March, 2004 at the age of 8 (3 weeks before his 9th birthday). Alex is now 10 years old and suffers from coronary heart disease caused by Kawasaski Disease. He has 3 giant aneurysms measuring 9-11mm. It has been a very long and stressful 1.5 years for myself and my family. Alex is currently on Warfarin and high dose ASA to help in the prevention blood clotting. He will be on medication for the rest of his life. Keep up the great work. Best wish to you and everyone that has been affected by this terrible disease. Sincerely, Jennifer McCormack ( A Mom that is haunted by the devastating affects of Kawasaki Disease everyday). |
| October 23, 2005 21:23:52 (GMT Time) |
| Name: | graziella calleja |
| Email: | graziellac@onvol.net.mt |
| HomePage: | http:// |
| Where are you from: | malta |
| Comments: | my daughter who will be two in november contracted this diseases a month ago. found your site very helpful |
| October 9, 2005 07:22:41 (GMT Time) |
| Name: | karen mackay |
| Email: | mackaykaren@msn.com |
| HomePage: | http:// |
| Where are you from: | invergordon scotland |
| Comments: | our 6 year old daughter mollie was just diagnosed with kd on 5.08.05, like todd she had similar event of symptoms apart from the conjunctavitis, she became unwell while on hols with sore throat, temp and rash we saw 4 docs over 5 days none of which picked up on it until day 16 when i mentioned peeling fingers to a gp where i work who instantly named kd without even seeing her, she was sent to hospital on day 17, echo done which is clear so far we go back for another on 7.9.05 she remains on aspirin daily, fingers began peeling on day 11 if they had not she may never had been diagnosed. we are now on day 44 and sole of mollies feet are still shedding, she is a different little girl, tires easily does not eat the same and is generally more clingy, as we feel she is frightened. i am a nurse and have never heard of kd until now, thank you for sharing your pics and info with us todd, it could be mollie we were looking at it is all so similar, i hope you are better soon. |
| September 1, 2005 17:12:17 (GMT Time) |
| Name: | Amber |
| Email: | amber.keller@ihc.com |
| HomePage: | http:// |
| Where are you from: | Ogden, Utah USA |
| Comments: | My daughter, Natalie, had RSV February of 2004 and was sick most of the winter, so when she became diagnosed with KD in June 2004, that was a very difficult and stressful time. She had red eyes, fever of over 105 F for several days, rash all over body, strawberry rash in mouth and swollen lymph nodes. We never experienced the peeling of the hands and feet. Fortunately our pediatrician knew about the disease so he started testing her (to rule out other things) and got her admitted in the hospital very quickly. Tomorrow we go for her 1 year echo. All the echos have been clear, so I have high hopes this one will too. I thank God everyday for the prompt care my daughter recieved. Especially after reading about what other people have experienced. Thank you for this website and making other aware of this rare disease. I hope Todd will continue doing well. |
| August 18, 2005 17:31:02 (GMT Time) |
| Name: | Sarah Wardell |
| Email: | sarwardell@yahoo.com |
| HomePage: | http:// |
| Where are you from: | Eagle, Colorado |
| Comments: | My son was diagnosed with KD on April 6, 2005. It began with a swollen lymphnode and high fever. His pediatrician admitted him to the hospital on April 1 and put him on high doses of IV antibiotics. He only continued to get worse. This is when they sent him to Children's Hospital in Denver. They diagnosed KD and we saw a dramatic improvement after he had been administer the IVIG. He did develop enlarged coronary arteries and a medium sized aneurism. Although he is recovering physically, his personality has difinately changed with all he has been through. He is very fearful and has more tantrums (even though the initial irritability has worn off). Have you seen any of this from Todd? Hope all is okay with you and Todd is recovering. Thanks, Sarah |
| June 20, 2005 21:57:41 (GMT Time) |
| Name: | Jody Williams |
| Email: | jodywilliams406@hotmail.com |
| HomePage: | http:// |
| Where are you from: | Bristol |
| Comments: | Hi, i just thought id let you know, when i was a baby i also contracted the kawasaki disease. I had it twice, the first time i was just six months old and then again at the age of two. The first time doctors couldnt tell us what it was and i got over it. However when i caught it again, like your experience there was a doctor familiar with the disease and i was treated. Im 17 now and have had no problems since then. For a long time it was disappointing to see very little information available about the disease so it's great to see you sharing your experiences. |
| June 19, 2005 08:47:06 (GMT Time) |
| Name: | Andrew Billitteri |
| Email: | palermofc@hotmail.com |
| HomePage: | http:// |
| Where are you from: | Bristol |
| Comments: | Hi, i seen your story in the evening post and was shocked to read about this disease. First of all i hope todd is getting better. My son also had kawasaki disease it was a horrible experience i wish not to repeat,(i hope). He is fine now. I know what you and your husband went through i dont wish it apon anyone. Anyway if you need any help to promote awarness of kawasaki i would be only too glad to help. thankyou for bringing this story to light. Andrew and family |
| June 17, 2005 21:35:42 (GMT Time) |
| Name: | caroline coles |
| Email: | cacoles@blueyonder.co.uk |
| HomePage: | http:// |
| Where are you from: | bristol |
| Comments: | HI MY SON WAS 4 MONTHS OLD WHEN HE HAD IT BUT WAS SEARIOUSLY ILL HAD TO BE FED BY A TUBE HAD A LEFT ENLARGED ARTERY WAS ON ASPRIN FOR A YEAR HAD A CARDIC CATHATERE ABOUT 12-18 MONTH AFTER GETTING THE DISEASE WAS GIVEN THE ALL CLEAR THEN BUT LIKE YOURSELVES WAS NOT DIAGONSED FIRST THEY THOUGHT IT WAS AN EAR INFECTION THEN A DRUG RASH AND IN THE END WHEN I TOOK HIM TO CHILDRENS HOSPITAL IT WAS A TOSS UP BETWEEN THAT AN MENINGITIS BUT DECIDED TO TREAT HIM FOR KAWASAKI AND THANKFULLY IT WAS THE RIGHT ONE I AM REALLY PLEASED THAT TODD IS OK NOW BUT ITS LIKE MENINGITIS SO EASLY MISSED BUT SO OBVIOUS HARRY ALSO HAD MENINGITIS WHEN HE WAS 2 WEEKS OLD SO WITH THAT AND KAWASAKI AND NEARLY HAVING DIED TWICE I AM NOT EASLY FOBBED OFF BY DOCTORS NOW I THINK YOUR WEB IS BRILLIANT KEEP THE GOOD WORK UP FROM CAROLINE COLES |
| June 16, 2005 19:06:14 (GMT Time) |
| Name: | Michele Marshall |
| Email: | smars1258@insightbb.com |
| HomePage: | http:// |
| Where are you from: | Peoria, Illinois USA |
| Comments: | I am the mother of a daughter (Gretchen) who had Kawasaki disease when she was two. She is now 17 and doing great. I empathize with you because I know exactly what you went through, and poor Todd. I am glad he is doing well now. Michele (PS: I grew up and lived in Bristol until I 1981. My family all still live there which is how I heard of Todd. He was featured in the Evening Post and mum told me about it. She said it bought back all the memories of Gretchen having the same illness. Mum came to the States to help me.) |
| June 16, 2005 17:49:15 (GMT Time) |
| Name: | hayley oldfield |
| Email: | hayleyoldfield@yahoo.com |
| HomePage: | http:// |
| Where are you from: | bristol, whitchurch |
| Comments: | I have just read your article in the evening post, and i would just like to say doctors thought my mum and dad was mad when i was 3yrs old (1984) i had this disease and i had top doctors from london come to the bri to find what was wrong with me and i was kept in a seperate ward from everyone else, they only diagnosed me with kawasaki disease when i recovered but i was one of the 1st. Im pleased you have made warnings to people that there is such a thing and i hope you are all doing fine.hayley |
| June 16, 2005 14:37:25 (GMT Time) |
| Name: | Pete and Tray |
| Email: | pheal@tiscali.co.uk |
| HomePage: | http:// |
| Where are you from: | ok, ok, UK |
| Comments: | Hi Todd, Hope all is well now, catch you soon, pete, tray, dean , katie, kaylee, |
| June 12, 2005 18:39:38 (GMT Time) |
| Name: | lynne |
| Email: | lynne0429@verizon.net |
| HomePage: | http:// |
| Where are you from: | new york, usa |
| Comments: | I enjoyed viewing your website. My 3yr.old son was also diagnosed in March and has also recovered with no heart involvement so far. Looks as though we both are very lucky. This has been an experience as you know. Seeing the pictures of Todd's peeling hands and feet were unbelievable because my son's peeling started on day 9 and in the same pattern, just as hands were peeling, big toe started and then continued the same. The pictures look identical to my sons. Thank you for raising awareness of this very scary, but thankfully usually treatable disease. |
| June 6, 2005 03:44:09 (GMT Time) |
| Name: | Tracy Miller |
| Email: | tmiller@hcal.ci.uk |
| HomePage: | http:// |
| Where are you from: | Warfield, Berkshire , uk. |
| Comments: | My 2 year old had KD in Jan third Echo showed Anerysym had gone. Phew one more ECG and ECho in August to make sure all is still well, and then a followup app in a years time.My poor little girl had all the symtoms your son had and at one point we thought we had lost her, but she is so well now and living a full and happy life, thank god. i would like to get a Bracelet for her, how do i do this. Tracy |
| June 1, 2005 11:26:26 (GMT Time) |
| Name: | Gai Reckless |
| Email: | recklessgolf@optusnet.com.au |
| HomePage: | http:// |
| Where are you from: | Australia |
| Comments: | My friend in NZ's daughter was diagnosed with Kawasaki's last week. Thanks for your website, I didn't know anything about Kawasaki's and was glad to find some information and someone elses story. I have passed the name of your website to them and I'm sure it will be a great help. Thanks again, Gai |
| June 1, 2005 06:53:04 (GMT Time) |
| Name: | Julie & Peter |
| Email: | jawaugh@tpg.com.au |
| HomePage: | http:// |
| Where are you from: | Australia |
| Comments: | Hi, We are new to KD, working through Day 6. I have spent the last few hours visiting web sites and reading about others experiences. I'm pleased to have found so much information but I am just realising that this disease may well be more than we originally thought. 15mnth old Alexander was diagnosed and treated on Day 4 and home on Day 5. Still v. lethargic, not able to move much, and horrific bleeding lips, we thought that everything would clear up pretty quick and we'd go back to normal, the echo in a month was almost certainly going to be clear, and that would be the end of it. But we haven't had the peeling yet, didn't know about the behavioral changes and have also read there maybe other long term effects besides the artery problems, like skin problems. Looks like we will be learning lot's more over the coming weeks. Kind Regards julie |
| May 27, 2005 13:31:18 (GMT Time) |
| Name: | paul bonfield |
| Email: | skippye4@aol.com |
| HomePage: | http:// |
| Where are you from: | london |
| Comments: | wkd site for raising awareness of this unfamiliar disease, |
| May 24, 2005 17:24:50 (GMT Time) |
| Name: | Julie Best |
| Email: | juliescrumptious1981@hotmail.com |
| HomePage: | http:// |
| Where are you from: | Mintlaw, Aberdeenshire, Scotland. |
| Comments: | When my brother was diagnosed when he was 5 there was relatvly no information about Kawasaki Disease and no support for my parents when they went through this with him. I only began researching Kawasaki disease for a college report and didnt expect to find so much great information. Im so pleased. Awareness, help and support are so important. Knowing that someone else has been through it gives others hope. My brother is now 22 and very healthy. Keep up the fantastic work. God Bless. |
| May 1, 2005 18:54:02 (GMT Time) |
| Name: | Cindy, A Kawasaki Heart |
| Email: | mscar44@aol.com |
| HomePage: | http:// |
| Where are you from: | Brentwood, California, USA |
| Comments: | Hi Sarah and Chris, Like so many of you here I had never in all my years heard of Kawasaki Disease until my little granddaughter, Lexi, was diagnosed with it in December 2004. Thank you for working to make people aware of this awful life threatening disease. Hopefully we, or atleast our children will live to see a cure and a cause of Kawasaki Disease. God bless you all, Cindy, A Kawasaki Heart |
| April 30, 2005 03:39:58 (GMT Time) |
| Name: | lor, len, ash lyn and andy |
| Email: | loraineperks@blueyonder.co.uk |
| HomePage: | http:// |
| Where are you from: | kingswood bristol |
| Comments: | |
| April 28, 2005 21:44:36 (GMT Time) |
| Name: | Deni Wise |
| Email: | twise726@hotmail.com |
| HomePage: | http:// |
| Where are you from: | Hemel Hempstead Hertfordshire England |
| Comments: | what a great site, we were feeling so alone, our 8 month old son Jake, is out of hospital today after seven days. He had to have two gamma infusions and is on high dose of asprin, can we please share our worries with you? look forward to your reply |
| April 28, 2005 16:36:39 (GMT Time) |
| Name: | CAROL |
| Email: | AKawasakiHeart@aol.com |
| HomePage: | www.kawasakidisease.us |
| Where are you from: | Alabama, USA |
| Comments: | The Site looks Great! Thanks for all you are doing to help with KD Awareness! |
| April 24, 2005 21:20:28 (GMT Time) |
| Name: | Louise Rowe |
| Email: | louise.h.rowe@ntlworld.com |
| HomePage: | http:// |
| Where are you from: | Aylesbury, Buckinghamshire, UK |
| Comments: | I am so pleased I have found this site, finally something for us in the UK. I read your diary and looked at your pictures, it tears to my eyes and the fear of KD has come back to me. My son who was 2 years old at the time was diagnosed with KD October 2004, this was after being poorly for two weeks and like your son he would not move. We made at least four different visits to the doctors, only to be told it was a viral infection. At the most viral infections only last 24 to 48 hours not two weeks. It was when his hands started peeling we realised something was not right, at first I thought he had burnt himself as it looked like a birst blister, but then it got bigger. Harry was admitted into hospital given something on a drip, I can't remember and was put on a high dosage of aspirin and remained on aspirin for 6 weeks. so far we have been to John Radcliffe twice for a heart scan and ECG, so far nothing has been picked up. We have to go again in September 2005, I'm scared! |
| April 24, 2005 01:10:08 (GMT Time) |
| Name: | Judy Bjorkman |
| Email: | hepsie1@earthlink.net |
| HomePage: | http:// |
| Where are you from: | Hollywood, FL USA |
| Comments: | My son Jeffrey had KD 8/92 at 15 months. Jeff is now 13 years old and still has ecg's, echo's and stress tests. We pray for a cure, a cause & a prevention! Keep up the good work of awareness! |
| April 22, 2005 23:20:14 (GMT Time) |
| Name: | Stephanie |
| Email: | stephklem@comcast.net |
| HomePage: | |
| Where are you from: | NH, USA |
| Comments: | I'm so glad that you started this site - there is a huge need in the UK for information. God bless you son - he is beautiful and I hope he continues to do well! |
| April 22, 2005 19:08:28 (GMT Time) |
| Name: | Andy |
| Email: | lonegman@aol.com |
| HomePage: | http:// |
| Where are you from: | mids |
| Comments: | so glad to hear todds on the mend chat soon andy |
| April 22, 2005 18:54:34 (GMT Time) |
| Name: | Emily Cox |
| Email: | |
| HomePage: | http:// |
| Where are you from: | Uk |
| Comments: | I've seen the pictures of Todd and I think you and Chris. Will do well to make more people aware of the kawasaki disease in the uk As before you found out Todd had this conition like 99% of the uks population I have never heard of this condition good luck to you both hope all goes well with Todd LOve emily xxx |
| April 20, 2005 13:36:19 (GMT Time) |
| Name: | CHRIS TODDS DAD |
| Email: | chrislacey157@aol.com |
| HomePage: | http://www.kawasaki-disease.co.uk |
| Where are you from: | BRISTOL UK |
| Comments: | TO MY DARLING WIFE AND SON (MY PRIDE AND JOY ) HARD TO PUT INTO WORDS BUT I HAVE THE UTMOST ADMIRATION FOR MY WIFE FOR DEALING WITH TODD’S ILLNESS AND KEEPING OUR FAMILY TOGETHER.. IN SUCH A ROUGH TIME IN OUR LIVES YET AGAIN YOU HAVE PROVED THAT YOU ARE ONE IN A MILLION, WITH WHICH THE BOYS AND I WOULD BE LOST WITHOUT! LOVE YOU WITH ALL MY HEART AND SOLE YOUR HUBBY XXXXXXXXXXX |
| April 19, 2005 19:13:27 (GMT Time) |
| Name: | Todd's mum (Sarah) |
| Email: | Akawasakiheartuk@aol.com |
| HomePage: | http:// |
| Where are you from: | Bristol,UK |
| Comments: | To my hubby, Thank you for all your help in getting this website up and running, and for all the support and love you give me too! Love always Sarah |
| April 19, 2005 15:44:08 (GMT Time) |
| Name: | Jonny |
| Email: | jonnyqt@mail.com |
| HomePage: | http://lucky7.to/jore/ |
| Where are you from: | Hungary |
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| December 22, 2005 11:32:48 (GMT Time) |
| Name: | wildman |
| Email: | wildman24_48@hotmail.com |
| HomePage: | http:// |
| Where are you from: | U.S |
| Comments: | you are a very strong boy todd. fight until you win. there is no second place todd. you are the winner. i salute you and all you have been through,however,this is a sad story to hear. wildman |
| December 4, 2005 16:07:49 (GMT Time) |
| Name: | Jennifer McCormack |
| Email: | letstalk_k.d@hotmail.com |
| HomePage: | http:// |
| Where are you from: | Canada |
| Comments: | Thank you for sharing Todds story. My son too was diagnosed with K.D March, 2004 at the age of 8 (3 weeks before his 9th birthday). Alex is now 10 years old and suffers from coronary heart disease caused by Kawasaski Disease. He has 3 giant aneurysms measuring 9-11mm. It has been a very long and stressful 1.5 years for myself and my family. Alex is currently on Warfarin and high dose ASA to help in the prevention blood clotting. He will be on medication for the rest of his life. Keep up the great work. Best wish to you and everyone that has been affected by this terrible disease. Sincerely, Jennifer McCormack ( A Mom that is haunted by the devastating affects of Kawasaki Disease everyday). |
| October 23, 2005 21:23:52 (GMT Time) |
| Name: | graziella calleja |
| Email: | graziellac@onvol.net.mt |
| HomePage: | http:// |
| Where are you from: | malta |
| Comments: | my daughter who will be two in november contracted this diseases a month ago. found your site very helpful |
| October 9, 2005 07:22:41 (GMT Time) |
| Name: | karen mackay |
| Email: | mackaykaren@msn.com |
| HomePage: | http:// |
| Where are you from: | invergordon scotland |
| Comments: | our 6 year old daughter mollie was just diagnosed with kd on 5.08.05, like todd she had similar event of symptoms apart from the conjunctavitis, she became unwell while on hols with sore throat, temp and rash we saw 4 docs over 5 days none of which picked up on it until day 16 when i mentioned peeling fingers to a gp where i work who instantly named kd without even seeing her, she was sent to hospital on day 17, echo done which is clear so far we go back for another on 7.9.05 she remains on aspirin daily, fingers began peeling on day 11 if they had not she may never had been diagnosed. we are now on day 44 and sole of mollies feet are still shedding, she is a different little girl, tires easily does not eat the same and is generally more clingy, as we feel she is frightened. i am a nurse and have never heard of kd until now, thank you for sharing your pics and info with us todd, it could be mollie we were looking at it is all so similar, i hope you are better soon. |
| September 1, 2005 17:12:17 (GMT Time) |
| Name: | Amber |
| Email: | amber.keller@ihc.com |
| HomePage: | http:// |
| Where are you from: | Ogden, Utah USA |
| Comments: | My daughter, Natalie, had RSV February of 2004 and was sick most of the winter, so when she became diagnosed with KD in June 2004, that was a very difficult and stressful time. She had red eyes, fever of over 105 F for several days, rash all over body, strawberry rash in mouth and swollen lymph nodes. We never experienced the peeling of the hands and feet. Fortunately our pediatrician knew about the disease so he started testing her (to rule out other things) and got her admitted in the hospital very quickly. Tomorrow we go for her 1 year echo. All the echos have been clear, so I have high hopes this one will too. I thank God everyday for the prompt care my daughter recieved. Especially after reading about what other people have experienced. Thank you for this website and making other aware of this rare disease. I hope Todd will continue doing well. |
| August 18, 2005 17:31:02 (GMT Time) |
| Name: | Sarah Wardell |
| Email: | sarwardell@yahoo.com |
| HomePage: | http:// |
| Where are you from: | Eagle, Colorado |
| Comments: | My son was diagnosed with KD on April 6, 2005. It began with a swollen lymphnode and high fever. His pediatrician admitted him to the hospital on April 1 and put him on high doses of IV antibiotics. He only continued to get worse. This is when they sent him to Children's Hospital in Denver. They diagnosed KD and we saw a dramatic improvement after he had been administer the IVIG. He did develop enlarged coronary arteries and a medium sized aneurism. Although he is recovering physically, his personality has difinately changed with all he has been through. He is very fearful and has more tantrums (even though the initial irritability has worn off). Have you seen any of this from Todd? Hope all is okay with you and Todd is recovering. Thanks, Sarah |
| June 20, 2005 21:57:41 (GMT Time) |
| Name: | Jody Williams |
| Email: | jodywilliams406@hotmail.com |
| HomePage: | http:// |
| Where are you from: | Bristol |
| Comments: | Hi, i just thought id let you know, when i was a baby i also contracted the kawasaki disease. I had it twice, the first time i was just six months old and then again at the age of two. The first time doctors couldnt tell us what it was and i got over it. However when i caught it again, like your experience there was a doctor familiar with the disease and i was treated. Im 17 now and have had no problems since then. For a long time it was disappointing to see very little information available about the disease so it's great to see you sharing your experiences. |
| June 19, 2005 08:47:06 (GMT Time) |
| Name: | Andrew Billitteri |
| Email: | palermofc@hotmail.com |
| HomePage: | http:// |
| Where are you from: | Bristol |
| Comments: | Hi, i seen your story in the evening post and was shocked to read about this disease. First of all i hope todd is getting better. My son also had kawasaki disease it was a horrible experience i wish not to repeat,(i hope). He is fine now. I know what you and your husband went through i dont wish it apon anyone. Anyway if you need any help to promote awarness of kawasaki i would be only too glad to help. thankyou for bringing this story to light. Andrew and family |
| June 17, 2005 21:35:42 (GMT Time) |
| Name: | caroline coles |
| Email: | cacoles@blueyonder.co.uk |
| HomePage: | http:// |
| Where are you from: | bristol |
| Comments: | HI MY SON WAS 4 MONTHS OLD WHEN HE HAD IT BUT WAS SEARIOUSLY ILL HAD TO BE FED BY A TUBE HAD A LEFT ENLARGED ARTERY WAS ON ASPRIN FOR A YEAR HAD A CARDIC CATHATERE ABOUT 12-18 MONTH AFTER GETTING THE DISEASE WAS GIVEN THE ALL CLEAR THEN BUT LIKE YOURSELVES WAS NOT DIAGONSED FIRST THEY THOUGHT IT WAS AN EAR INFECTION THEN A DRUG RASH AND IN THE END WHEN I TOOK HIM TO CHILDRENS HOSPITAL IT WAS A TOSS UP BETWEEN THAT AN MENINGITIS BUT DECIDED TO TREAT HIM FOR KAWASAKI AND THANKFULLY IT WAS THE RIGHT ONE I AM REALLY PLEASED THAT TODD IS OK NOW BUT ITS LIKE MENINGITIS SO EASLY MISSED BUT SO OBVIOUS HARRY ALSO HAD MENINGITIS WHEN HE WAS 2 WEEKS OLD SO WITH THAT AND KAWASAKI AND NEARLY HAVING DIED TWICE I AM NOT EASLY FOBBED OFF BY DOCTORS NOW I THINK YOUR WEB IS BRILLIANT KEEP THE GOOD WORK UP FROM CAROLINE COLES |
| June 16, 2005 19:06:14 (GMT Time) |
| Name: | Michele Marshall |
| Email: | smars1258@insightbb.com |
| HomePage: | http:// |
| Where are you from: | Peoria, Illinois USA |
| Comments: | I am the mother of a daughter (Gretchen) who had Kawasaki disease when she was two. She is now 17 and doing great. I empathize with you because I know exactly what you went through, and poor Todd. I am glad he is doing well now. Michele (PS: I grew up and lived in Bristol until I 1981. My family all still live there which is how I heard of Todd. He was featured in the Evening Post and mum told me about it. She said it bought back all the memories of Gretchen having the same illness. Mum came to the States to help me.) |
| June 16, 2005 17:49:15 (GMT Time) |
| Name: | hayley oldfield |
| Email: | hayleyoldfield@yahoo.com |
| HomePage: | http:// |
| Where are you from: | bristol, whitchurch |
| Comments: | I have just read your article in the evening post, and i would just like to say doctors thought my mum and dad was mad when i was 3yrs old (1984) i had this disease and i had top doctors from london come to the bri to find what was wrong with me and i was kept in a seperate ward from everyone else, they only diagnosed me with kawasaki disease when i recovered but i was one of the 1st. Im pleased you have made warnings to people that there is such a thing and i hope you are all doing fine.hayley |
| June 16, 2005 14:37:25 (GMT Time) |
| Name: | Pete and Tray |
| Email: | pheal@tiscali.co.uk |
| HomePage: | http:// |
| Where are you from: | ok, ok, UK |
| Comments: | Hi Todd, Hope all is well now, catch you soon, pete, tray, dean , katie, kaylee, |
| June 12, 2005 18:39:38 (GMT Time) |
| Name: | lynne |
| Email: | lynne0429@verizon.net |
| HomePage: | http:// |
| Where are you from: | new york, usa |
| Comments: | I enjoyed viewing your website. My 3yr.old son was also diagnosed in March and has also recovered with no heart involvement so far. Looks as though we both are very lucky. This has been an experience as you know. Seeing the pictures of Todd's peeling hands and feet were unbelievable because my son's peeling started on day 9 and in the same pattern, just as hands were peeling, big toe started and then continued the same. The pictures look identical to my sons. Thank you for raising awareness of this very scary, but thankfully usually treatable disease. |
| June 6, 2005 03:44:09 (GMT Time) |
| Name: | Tracy Miller |
| Email: | tmiller@hcal.ci.uk |
| HomePage: | http:// |
| Where are you from: | Warfield, Berkshire , uk. |
| Comments: | My 2 year old had KD in Jan third Echo showed Anerysym had gone. Phew one more ECG and ECho in August to make sure all is still well, and then a followup app in a years time.My poor little girl had all the symtoms your son had and at one point we thought we had lost her, but she is so well now and living a full and happy life, thank god. i would like to get a Bracelet for her, how do i do this. Tracy |
| June 1, 2005 11:26:26 (GMT Time) |
| Name: | Gai Reckless |
| Email: | recklessgolf@optusnet.com.au |
| HomePage: | http:// |
| Where are you from: | Australia |
| Comments: | My friend in NZ's daughter was diagnosed with Kawasaki's last week. Thanks for your website, I didn't know anything about Kawasaki's and was glad to find some information and someone elses story. I have passed the name of your website to them and I'm sure it will be a great help. Thanks again, Gai |
| June 1, 2005 06:53:04 (GMT Time) |
| Name: | Julie & Peter |
| Email: | jawaugh@tpg.com.au |
| HomePage: | http:// |
| Where are you from: | Australia |
| Comments: | Hi, We are new to KD, working through Day 6. I have spent the last few hours visiting web sites and reading about others experiences. I'm pleased to have found so much information but I am just realising that this disease may well be more than we originally thought. 15mnth old Alexander was diagnosed and treated on Day 4 and home on Day 5. Still v. lethargic, not able to move much, and horrific bleeding lips, we thought that everything would clear up pretty quick and we'd go back to normal, the echo in a month was almost certainly going to be clear, and that would be the end of it. But we haven't had the peeling yet, didn't know about the behavioral changes and have also read there maybe other long term effects besides the artery problems, like skin problems. Looks like we will be learning lot's more over the coming weeks. Kind Regards julie |
| May 27, 2005 13:31:18 (GMT Time) |
| Name: | paul bonfield |
| Email: | skippye4@aol.com |
| HomePage: | http:// |
| Where are you from: | london |
| Comments: | wkd site for raising awareness of this unfamiliar disease, |
| May 24, 2005 17:24:50 (GMT Time) |
| Name: | Julie Best |
| Email: | juliescrumptious1981@hotmail.com |
| HomePage: | http:// |
| Where are you from: | Mintlaw, Aberdeenshire, Scotland. |
| Comments: | When my brother was diagnosed when he was 5 there was relatvly no information about Kawasaki Disease and no support for my parents when they went through this with him. I only began researching Kawasaki disease for a college report and didnt expect to find so much great information. Im so pleased. Awareness, help and support are so important. Knowing that someone else has been through it gives others hope. My brother is now 22 and very healthy. Keep up the fantastic work. God Bless. |
| May 1, 2005 18:54:02 (GMT Time) |
| Name: | Cindy, A Kawasaki Heart |
| Email: | mscar44@aol.com |
| HomePage: | http:// |
| Where are you from: | Brentwood, California, USA |
| Comments: | Hi Sarah and Chris, Like so many of you here I had never in all my years heard of Kawasaki Disease until my little granddaughter, Lexi, was diagnosed with it in December 2004. Thank you for working to make people aware of this awful life threatening disease. Hopefully we, or atleast our children will live to see a cure and a cause of Kawasaki Disease. God bless you all, Cindy, A Kawasaki Heart |
| April 30, 2005 03:39:58 (GMT Time) |
| Name: | lor, len, ash lyn and andy |
| Email: | loraineperks@blueyonder.co.uk |
| HomePage: | http:// |
| Where are you from: | kingswood bristol |
| Comments: | |
| April 28, 2005 21:44:36 (GMT Time) |
| Name: | Deni Wise |
| Email: | twise726@hotmail.com |
| HomePage: | http:// |
| Where are you from: | Hemel Hempstead Hertfordshire England |
| Comments: | what a great site, we were feeling so alone, our 8 month old son Jake, is out of hospital today after seven days. He had to have two gamma infusions and is on high dose of asprin, can we please share our worries with you? look forward to your reply |
| April 28, 2005 16:36:39 (GMT Time) |
| Name: | CAROL |
| Email: | AKawasakiHeart@aol.com |
| HomePage: | www.kawasakidisease.us |
| Where are you from: | Alabama, USA |
| Comments: | The Site looks Great! Thanks for all you are doing to help with KD Awareness! |
| April 24, 2005 21:20:28 (GMT Time) |
| Name: | Louise Rowe |
| Email: | louise.h.rowe@ntlworld.com |
| HomePage: | http:// |
| Where are you from: | Aylesbury, Buckinghamshire, UK |
| Comments: | I am so pleased I have found this site, finally something for us in the UK. I read your diary and looked at your pictures, it tears to my eyes and the fear of KD has come back to me. My son who was 2 years old at the time was diagnosed with KD October 2004, this was after being poorly for two weeks and like your son he would not move. We made at least four different visits to the doctors, only to be told it was a viral infection. At the most viral infections only last 24 to 48 hours not two weeks. It was when his hands started peeling we realised something was not right, at first I thought he had burnt himself as it looked like a birst blister, but then it got bigger. Harry was admitted into hospital given something on a drip, I can't remember and was put on a high dosage of aspirin and remained on aspirin for 6 weeks. so far we have been to John Radcliffe twice for a heart scan and ECG, so far nothing has been picked up. We have to go again in September 2005, I'm scared! |
| April 24, 2005 01:10:08 (GMT Time) |
| Name: | Judy Bjorkman |
| Email: | hepsie1@earthlink.net |
| HomePage: | http:// |
| Where are you from: | Hollywood, FL USA |
| Comments: | My son Jeffrey had KD 8/92 at 15 months. Jeff is now 13 years old and still has ecg's, echo's and stress tests. We pray for a cure, a cause & a prevention! Keep up the good work of awareness! |
| April 22, 2005 23:20:14 (GMT Time) |
| Name: | Stephanie |
| Email: | stephklem@comcast.net |
| HomePage: | |
| Where are you from: | NH, USA |
| Comments: | I'm so glad that you started this site - there is a huge need in the UK for information. God bless you son - he is beautiful and I hope he continues to do well! |
| April 22, 2005 19:08:28 (GMT Time) |
| Name: | Andy |
| Email: | lonegman@aol.com |
| HomePage: | http:// |
| Where are you from: | mids |
| Comments: | so glad to hear todds on the mend chat soon andy |
| April 22, 2005 18:54:34 (GMT Time) |
| Name: | Emily Cox |
| Email: | |
| HomePage: | http:// |
| Where are you from: | Uk |
| Comments: | I've seen the pictures of Todd and I think you and Chris. Will do well to make more people aware of the kawasaki disease in the uk As before you found out Todd had this conition like 99% of the uks population I have never heard of this condition good luck to you both hope all goes well with Todd LOve emily xxx |
| April 20, 2005 13:36:19 (GMT Time) |
| Name: | CHRIS TODDS DAD |
| Email: | chrislacey157@aol.com |
| HomePage: | http://www.kawasaki-disease.co.uk |
| Where are you from: | BRISTOL UK |
| Comments: | TO MY DARLING WIFE AND SON (MY PRIDE AND JOY ) HARD TO PUT INTO WORDS BUT I HAVE THE UTMOST ADMIRATION FOR MY WIFE FOR DEALING WITH TODD’S ILLNESS AND KEEPING OUR FAMILY TOGETHER.. IN SUCH A ROUGH TIME IN OUR LIVES YET AGAIN YOU HAVE PROVED THAT YOU ARE ONE IN A MILLION, WITH WHICH THE BOYS AND I WOULD BE LOST WITHOUT! LOVE YOU WITH ALL MY HEART AND SOLE YOUR HUBBY XXXXXXXXXXX |
| April 19, 2005 19:13:27 (GMT Time) |
| Name: | Todd's mum (Sarah) |
| Email: | Akawasakiheartuk@aol.com |
| HomePage: | http:// |
| Where are you from: | Bristol,UK |
| Comments: | To my hubby, Thank you for all your help in getting this website up and running, and for all the support and love you give me too! Love always Sarah |
| April 19, 2005 15:44:08 (GMT Time) |