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Christina's Guestbook
Displaying 301 - 351 of 351 total posts.    Previous  Page: 1 - 2 - 3 - 4 

submitted on April 10, 2010 6:23 PM EDT
Name: Sue Balzano
Email Address: suebalzano@comcast.net
How did you hear about this site?

submitted on April 9, 2010 1:41 PM EDT
Name: Chantelle Green
Email Address: channy-angel@hotmail.co.uk
Comments: I'm so sorry to hear about your little girl. I'm sure she would be so proud that her memory is kept alive by helping others understand our condition. I'm 16 years old and i have Shone's Syndrome. I have had 12 open heart surgeries, my first was 3 days old and i had my last one when i was 11. My condition is now considered 'stable' but i am to have more surgeries in the future.
How did you hear about this site? Researching Shone's Syndrome

submitted on March 4, 2010 5:09 PM EST
Name: Staci Pezqueda
Email Address: pezqueda@gmail.com
Comments: Hi from Oregon!
How did you hear about this site? My son has Shone's. He is 14 and I rarely find any information on the web. I did a search and was surprised to see your site. Thanks for keeping Shone's information out there!

submitted on November 24, 2009 10:07 AM EST
Name: Christina Capozzi
Email Address:
How did you hear about this site? I'm very sorry to hear about your loss. my name is Christina Capozzi too!

submitted on November 18, 2009 9:26 PM EST
Name: kelly manz
Email Address: kellymanz@hotmail.com
Comments: i have to apologize for my last entry. when i was redirected to your site, i did not see the Home page. i unfortunately did not read that Christina passed away in 1997. Im so sorry for your loss and she would be so proud to help other children affected by Shone's Syndrome. You guys are doing wonderful things with this foundation.
How did you hear about this site?

submitted on November 18, 2009 9:23 PM EST
Name: kelly manz
Email Address: kellymanz@hotmail.com
Comments: i read Christina's story and its amazing! my daughter was born last fall with Taussig-Bing and has always been fed via NG tube and now Gtube. She doesnt eat or drink anything and she constantly projectile vomits, even after her fundo procedure. It is nice to hear that Christina is doing well with her eating now! Chloe had heart surgery 6 months ago and so far so good!
How did you hear about this site? I have a informational blog dedicated to raising CHD awareness. I wanted to post about Shone's Syndrome. I googled it and your name came up. So glad it did! http://chdbabies.blogspot.com

submitted on November 17, 2009 8:49 PM EST
Name: Devin
Email Address:
Comments: I was in Christina's Kindergarten class. At the time I think I was to young to understand all that was going on. But each time I walk into West El I love going into the library and looking at the beautiful moral in honor of your daughter. She touched my heart and I remember our instant friendship and the memories that we shared. I will never forget each time we left the classroom I would hold her hand and walk down the hall. I feel honored with the fact that I got to meet such a special little girl. This website is beautiful. She will always be remembered
How did you hear about this site?

submitted on November 3, 2009 1:45 PM EST
Name: Christina Locke
Email Address:
Comments: I have this disease. It has been seven years since my last surgery. I am eighteen years old now and have never been better.
How did you hear about this site? Google.

submitted on October 8, 2009 12:16 PM EDT
Email Address: kathryn557@hotmail.com
Comments: Liam
How did you hear about this site? My 6 year old grandson has Shone's.He sustained a right MCA stroke post cardiac catherization.At Childrens Hospital Boston.We need support.

submitted on October 1, 2009 9:18 AM EDT
Name: Heidi Munro
Email Address: eeyore_234@yahoo.com
Comments: I read Christina's story and it truly touched me. I know that other people in the world have Shone's Syndrome, but i guess its different when you actually see it or read about someone else having it. God bless!
How did you hear about this site? I was surfing the net looking for info on Shone's Syndrome to see how i might go about getting pregnant in the future, if its even the best thing for my body.

submitted on October 1, 2009 2:21 AM EDT
Name: autumn mckinnon
Email Address: autumn_mckinnon@ymail.com
Comments: my son has shones syndrome
How did you hear about this site? i googled shones syndrome.

submitted on June 25, 2009 1:06 PM EDT
Name: tammy lagemann
Email Address: tlagemann@yahoo.com
Comments: my child has congenital heart disease with shone's syndrone and she is haveing heart surgery again in july
How did you hear about this site? judt went look for sites

submitted on June 20, 2009 4:56 PM EDT
Name: Michelle Ryan
Email Address: MRyan2009@yahoo.com
Comments: rip christina
How did you hear about this site? my mother

submitted on May 2, 2009 10:25 AM EDT
Name: Susan Swain
Email Address: OTSC54@comcast.net
Comments: Christina`s story touched my heart. She was an incredible little girl and obviously was blessed to have such a loving, devoted family. One life touches another...and hers was a gift!
How did you hear about this site? Researching Shone`s Syndrome, which my grandson has. He just turned 18 months, and underwent heart bypass when he was 2 days old.

submitted on November 11, 2008 2:19 PM EST
Name: Jenifer Lipe
Email Address: babeblujen821@aol.com
Comments: This foundation ia amazing. My daughter Claire also has shones. Shes 9 weeks old and currently at little rock childrens hospital. Right now we are playing the waiting game as far as figuring out what surgery would be best for her or if they need to go ahead and do a transplant.... Our babies are so special
How did you hear about this site? searching information about shones and this site came up

submitted on October 28, 2008 12:31 AM EDT
Name: tegan Jansen
Email Address: twisted_twin_sisters@hotmail.com
Comments: i was borne 1992 i am now 16 years old and have shones i have hade many operations when i was a baby. The doctors said i was going to die many times to my mum but yet im still hear i have a boy friend and i run around i am helthy and happy, I do no i have this disease but it dos not stop me i plan to live my life to the full. i m happy and even with this diseas i cant be stoped.
How did you hear about this site? my mum told me as she was finding out about it years agoe.

submitted on October 1, 2008 12:17 PM EDT
Name: Richard B. Whiting, MD
Email Address: rbwhiting@medscape.com
Comments: I have served as cardiologist to three wonderful people with Shone's
How did you hear about this site? Happened to see this web site as I reviewed what is written on Shone's syn. Active interest in Con. Heart Dis. in Adults for many years.

submitted on September 8, 2008 12:50 PM EDT
Name: christine lapierre
Email Address: christostressed@aol.com
Comments: found you online
How did you hear about this site? my son russell has shones syndrome what a rollercoaster he is 13 an has had 18 surgeries with more to come. this will never end !!!!!!!! pray4russell

submitted on July 26, 2008 7:55 PM EDT
Name: Kimberly Gleaton
Email Address: kimgleaton@yahoo.com
Comments: my thoughts & prayers are with you. My 6 year old has this as well, its very scary.
How did you hear about this site? just looked up shones syndrome

submitted on July 2, 2008 6:58 PM EDT
Email Address: mccrob3@aol.com
Comments: im so sorry for your loss my heart is with you always
How did you hear about this site? my own searching for info / advice as my 2 yr old son callum also has shone's syndrome , vsd , hlhs ect mum on a mission to make sure hes not fighting alone & to try & do all i can to lessan his hearache & pain & my familys love laura & family xx

submitted on June 4, 2008 2:01 PM EDT
Name: Missy Perez
Email Address: www.missycperez@yahoo.com
How did you hear about this site? My daughter, Mia, passed away on Sept. 11,2007 from Shone's Syndrome. I was looking up other stories of children who were born with the same diagnosis. Thank you.

submitted on April 27, 2008 4:00 PM EDT
Name: Scott & Julie Lamar
Email Address: julie@cal-ore.com
Comments: Our hearts go out to you and your family, What an amazing thing you have done in memory of your beautiful daughter. Our 13 year old daughter Taylor also has Shones. She was first diagnosed by Dr McIrvin and received her first surgery at 9 months by Dr. Albert Starr, both with Legacy Emanuel Hospital in Portland OR. Her first surgery was to repair her coarctation. Exactly one year later she had her 2nd surgery by the same doctors, at the same hospital. This was open heart surgery to repair her mitro valve stenosis & subaortic stenosis. Here we are now, 11 years later and Taylor is scheduled for her 3rd surgery on the 9th of March. This surgery will be a cardiac catheterization to place a stint into her aorta to open up the previouse coarctation repair that she has since out grown. This is a much less invasive/out patient procedure which we are very thankful for. Our daughter is a healthy and beautiful 13 year old, who has never once let this disease slow her down. We will be sure to post an update. In the meantime we welcome any emails, questions, feed back or if you just need support. We found it helpful and reassuring to talk with others who have been there and who know. Our thoughts and prayers go out to every person who has been affected by this disease. Our only advice would be to keep your head up, stay strong and believe in the power of prayer. It has gotten us through alot. God bless to all!
How did you hear about this site? In search of info and other families currently battling or who have battled shones. Trying to prep for daughter's 3rd surgery.

submitted on April 7, 2008 5:03 AM EDT
Name: charlotte-rose
Email Address: tarty.tina@blueyonder.co.uk
Comments: i am 16 months old and im a shones baby, im not as severe as some cases and i have only had the one operation so far.
How did you hear about this site?

submitted on March 20, 2008 10:52 PM EDT
Name: Gail Jackson
Email Address: rpjmimi@yahoo.com
Comments: My grandson died 3 days before his 7th birthday from Shone's.
How did you hear about this site? I just kept looking for sites about Shone's. It is haunting me.

submitted on March 6, 2008 11:49 PM EST
Name: Marty Evans
Email Address: rickandmarty@hotmail.com
Comments: My daughter was originally diagnosed with HLHS and had a Norwood. When she was 6 months old they discovered that her left ventricle and valves had grown in a way that would support normal, biventricular circulation. She is now considered as having Shone's Syndrome. It is likely that she will have to have her valves replaced. But for now she is doing great!
How did you hear about this site? googled Shones Syndrome

submitted on November 16, 2007 7:15 PM EST
Name: Michelle McGrath
Email Address: michelle@mcgrath671.orangehome.co.uk
Comments: my daughter also has shones syndrome
How did you hear about this site? by chance whilst looking up shones syndrome.

submitted on November 3, 2007 9:59 PM EDT
Name: maria's mom
Email Address: newhampshirealso
Comments: my daughter was born with shones in may of 2003 thank you so much for what you are doing every day of maria's life is a gift for if she had been born ten years ago I'm afraid things would have been much different. she has had three proceedures in the last four years. with a spinal cord injury as a result from her co-arc repair shortly after birth. this I'm told is very rare. I am starving for information and I truly appreciate what i have found here at Christina's sight - thank you Christina for helping those still fighting! we will say a prayer for you... god bless
How did you hear about this site?

submitted on July 4, 2007 9:37 AM EDT
Name: Kathy
Email Address:
Comments: My daughter who is 29 was born with Shone's syndrom and it doing well. We have been told that she will probably need a heart transplant by the time she is 40 due to problems with her left ventricle. Right now she works full time, ice skates and lives life. I am glad to see there is someone out there supporting research on this disease
How did you hear about this site? Googled Shone's Syndrome

submitted on June 30, 2007 11:40 PM EDT
Name: Kristin
Email Address: special_humanbeing@hotmail.com
Comments: Christina and I have a lot in common. I was born with Shone's Syndrome back in 1984. After 7 cardiac surgeries, I am now waiting for a heart transplant at age 22. I think it is wonderful that you have set up a fountain in honor of Christina. Thank you for supporting research of this CHD!
How did you hear about this site? Google.

submitted on May 15, 2007 8:29 PM EDT
Name: yanesa jimenez
Email Address: yosyan25@yahoo.com
Comments: My 2 years old have Shone Syndrome. This site is great, I can see hope for my son now and if something else happen I will be very greatfull because I have the most amazing kid like Christina, who is an example of strenght and pure love.
How did you hear about this site? look up info about the syndrome

submitted on February 7, 2007 12:45 AM EST
Name: Glenn Amorosia
Email Address: gamorosia@aol.com
Comments: Our 32-year old son has Shone's. Our prayers go out to you for this beautiful tribute to your daughter. The treatment gets better and better.
How did you hear about this site? Googled Shone's Syndrome

submitted on January 28, 2007 11:30 PM EST
Name: Shelley Moore
Email Address: conner531@aol.com
Comments: My darling son has Shone's. I enjoyed your website. What an awesome tribute to Christina. She is with Jesus and we will see her again! Grace & Peace.
How did you hear about this site? Looking up info on shone's.

submitted on September 5, 2006 1:16 PM EDT
Name: Steadman, Midlands, UK
Email Address:
Comments: I am very sorry to read about your loss. Our beatiful daughter Emma also died aged 9 months following Shone's diagnosis and a subsequent Norwood stage 1 operation. She was a very brave girl who showed incredible bravery and gave much joy to all who met her in her short life. Keep strong.
How did you hear about this site? Researching Shone's

submitted on August 15, 2006 12:02 AM EDT
Name: Kelly Duncan
Email Address: kduncan@warsaw.k12.in.us
Comments: What a wonderful way to remember your daughter and help others!
How did you hear about this site?

submitted on June 26, 2006 4:41 PM EDT
Name: Sharon Mosby
Email Address: smosby_us@yahoo.com
Comments: This is a great site
How did you hear about this site? I searched yahoo for Shones. They think my daughter might have it. She was born with aortic valve stenosis, coarctation and VSD. She has had them repaired but her mitral valve is thickening and so is her aortic. She is not severe enough for surgery right now but we talked with the doctor and she thinks this is something she has.

submitted on March 4, 2006 4:17 PM EST
Name: Dawn Tracy
Email Address: dmt122@yahoo.com
Comments: This is a beautiful tribute to your adorable daughter. I am a student nursing in my junior year and one of my little patients had this syndrome which prompted my curiousity to look up more information about this syndrome. One of my very dear friend's has a sone who was brom with a whole in all four chambers of his heart. Two open heart surgeries later he is now a healthy, happy, intelligent 14 year old young man with a bright future. My heart goes out to all of you and my prayers go up for you. God Bless!
How did you hear about this site? I found this by a search engine

submitted on February 27, 2006 6:34 AM EST
Name: Amy Jacobs
Email Address: aejacob1@gmail.com
Comments: I was born in 1985 and diagnosed with Shone's syndrome. I have had countless operations and been to hospitals in Boston, Philadelphia, Durham and Charlotte, NC and Ann Harbor, Michigan. I have had three mitral valve replacements. I turned 20 this past August. I don't know if I will require any further operations. But, for now, I feel great, can keep up with my friends, and am living the life of a normal college student. My parents have been so amazing. I realize how lucky I am and hope that this can provide some encouragement for others. If you need any type of support feel free to contact me.
How did you hear about this site? researching shone's online

submitted on February 19, 2006 6:30 PM EST
Name: Neil Morton
Email Address: morton.mgt@bigpond.com
Comments: I was borne with congenital heart disease in 1952 and had my first heart operation in 1957 the sixth in Australia. It wasn't until I had my last operation in 2000 replacing the mitral valve that i was diagnosed with Shones syndrome.
How did you hear about this site? Researching Shones Syndrome

submitted on February 9, 2006 8:40 AM EST
Name: Peggy and Bruce Belgarde
Email Address: bpbelgarde@yahoo.com
Comments: Our 16 month old is a Shones baby, she was 10 weeks old when it was found. She is very little, but very, very active. She will have surgery soon, but you really can't tell she's got a sick heart. Anyone who is looking for support, please e-mail anytime.
How did you hear about this site? Looking up new stuff about Shones.

submitted on January 30, 2006 8:51 PM EST
Name: Jullianne Targon
Email Address: julliannet@yahoo.com
Comments: My 7 month old daughter was diagnosed with Shone's at three weeks old. She had open heart surgery at one month to repair an a.s.d., v.s.d. and an aortic coarctation. It is refreshing to see that she is not the only baby with this disease.
How did you hear about this site? Search engine

submitted on January 17, 2006 4:53 PM EST
Name: Attila Nagy
Email Address: naw72@hotmail.com
Comments: I was deeply moved by this website and the pictures on it. I cannot comprehend your loss.
How did you hear about this site? By accident.

submitted on January 7, 2006 10:03 PM EST
Name: Leigh Anne Moore
Email Address: wmoore4@jam.rr.com
Comments: My 7 yr old son has Shones. He had a coarct repair at 8 days, and a interventional cath at 4 yrs., and open heart to repair subaortic stenosis and reconstruct the aorta at 4 1/2 yrs. Dr. Roger Mee at the Cleveland Clinic did his 2nd surgery. Thank you for encouraging research! When I began searching the web 7 years ago there was hardly any info.
How did you hear about this site? I heard about this through a search engine.

submitted on November 12, 2005 4:59 PM EST
Name: Dawn & Stuart Heywood-Wakeman
Email Address: www.stuartwakeman69@hotmail.com
Comments: Our son has Shones Syndrome and is only 2 years old. We are hoping he will get better but we dont know what to expect.
How did you hear about this site? Looked up Shones Syndrome on internet and found this site.

submitted on November 12, 2005 4:49 PM EST
Name: Dawn & Stuart Heywood-Wakeman
Email Address: www.stuartwakeman69@hotmail.com
Comments: Very moving site.
How did you hear about this site? Looked up Shones Syndrome on internet and found this sight.

submitted on September 9, 2005 12:12 AM EDT
Name: Julie Kennedy
Email Address: pjmkenn@hotmail.com
Comments: We have a son, Christopher, who is going through open heart surgery right now, his third procedure at Children's Hospital Boston. He is 11 months old and was diagnosed with Shone's at 9 months. Thank you for all that you do to support research for Shone's. God bless.
How did you hear about this site?

submitted on May 30, 2005 10:40 PM EDT
Name: Amanda Deeter
Email Address: amanda_deeter@yahoo.com
Comments: My daughter has just been disgnoised w/ shone's we hope that everyone else with the same keeps their heads up as we are trying to.
How did you hear about this site? search engine

submitted on May 6, 2005 11:04 AM EDT
Name: Carrie Riffe
Email Address: sand_co_cr
Comments: I have a two year old daughter with Shone's syndrome and I am having a hard time finding any information on it.
How did you hear about this site?

submitted on May 5, 2005 9:33 AM EDT
Name: Matej Marc
Email Address: matej.marc@dd-ceste.si
How did you hear about this site? I was searching to find anything about Shones syndrome and children with this kind of congenital heart desease. We had a dauhgter with the same name Kristina, born in avgust 2003 with Shones syndrome. She had a big open heart surgery in Great Ormond Street Hospital, London in january 2004 and go to heaven with 15 monts in november 2004.

submitted on April 8, 2005 11:38 PM EDT
Name: Carman Bevis, RN
Email Address: bevisc@musc.edu
Comments: what a wonderful way to remeber a child!
How did you hear about this site? looking up info on shones syndrome to learn more about it since I have a patient with shone's on my unit

submitted on March 30, 2005 8:19 AM EST
Name: E Carmosino
Email Address: ecarmosino@auchter.com
Comments: I also lost my little one, Sean, to Shones at 19 months old. Thank you for what you are doing here.
How did you hear about this site? Search engine

submitted on March 22, 2005 12:37 PM EST
Name: M Boyington
Email Address: mwboyington@aol.com
Comments: My heart goes out to you. I have a 19 year-old son with Shone's.
How did you hear about this site? Search engine