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Contact parents
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Would you like a home page at Left Heart Matters? Left Heart Matters would like to offer you the chance to place your special HLHS child on the web for FREE!. You can include a scanned picture and as long a story as you like! And remember, its free! If you would like to be added, then please mail us with your story and any other details you would like us to include. Ideally we would like:
And we'll do the rest! We look forward to hearing from you all soon!
Parents online around the world
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| Name | Web site | Details | |
| Peter & Carol Messer Parents of: Thomas Messer (UK) | messer@fastnet.co.uk ICQ ID: 5076902 |
Left Heart Matters | Thomas lives in the UK, Scotland in a small town called Johnshaven. His big brother, Mark, looks after Left Heart Matters. |
| Ingrid and Stephen Burnell Parents of: Chandler |
chanlin@bellsouth.net ICQ ID: 3094755 |
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| Greg Lybrand
Parent of: Joshua Preston |
glybrand@compuserve.com | Greg Lybrands Home Page | "This page is a collection of information from my personal experience with my son Joshua Preston in 1990 and links I've found on the net that can provide some education on the subject" |
| Shane Michael Shepard | candsly@calweb.com | Shanes Place | This is a beautiful site! "My name is Shane Michael Shepard and for my age I already have quite a story to tell. The interesting part of my story began when..." |
| Jeff & Diane Horsager Parents of: John Henry Horsager | jeffj@ccnet.com | The Horsager Home Page | "John Henry was an incredible little boy. He survived three open heart surgeries; the first when he was three days old; the last when he was 20 months of age. Although his time on this world was short, his impact on the people that knew him will be long lasting." |
| Laura & Jeff Parents of: Brian |
ulaszek5@aol.com | Brian's Story | "Well where do I begin? I guess the moment I realized I was pregnant with a son..." |
| Russ Gillespue Parent of: Joshua |
rgillesp@dpcmail.dukepower.com | Joshua | "Joshua...Our Hypoplastic Left Heart Syndrome Miracle" |
| Rebecca Green Grand-parent of: Dyallon |
rn.green@baylordallas.edu | Dyallons page at Left Heart Matters | "I'm not the parent, I'm the grandparent, of a beautiful little boy with HLHS. He was born 1 week ago today (11th June 1997). At age 2 days he had surgery to correct his T/E fistula. He has his Norwood procedure tomorrow" afternoon. |
| Dennis/Caroline Ahrens Parents of: Hannah |
dcahrens@alaska.net | "My Daughter Hannah is 2ys and HLHS she is post-op fontan by two months." | |
| Michelle Parent of: Brandon |
MPJRN@aol.com | "My little boy, Brandon, is now 3 years old and has HLHS. He wasn't diagnoised until 3 days after birth when his body began to shut down. We were very lucky that the docs were able to stablize him. When he was finally able to have his surgery he was 8 days old when they did the Norwood. He came through with flying colors and has done great ever since." | |
| Ken & Sherry Parents of: Nicholas |
rkm@cyberlink.bc.ca | "Nicholas is doing fine his last check up went well. We are still waiting for his second operation his pressures are still to high. He is still growing and acting like every other child he is our little fighter." | |
| Rich & Roxanne Parents of twins: Bailey (HLHS) & Joshua (No HLHS) |
rschafer@castles.com | "Bailey is doing well. As is Joshua. They both keep me on my toes!" | |
| Paul & Tina Goodland Parents of: Garrison (HLHS) & Savannah (No HLHS) |
Overpaul@aol.com | "Garrison is in the first grade, is very healthy and has not been on medication since his final surgery. He had minimal recovery periods (5-7 days) from each procedure. He is active in sports and very enthusiastic and happy. His only signs of HLHS (besides the scars) are blueness around his mouth, especially after swimming, and a propensity to cough." | |
| Misty Parent of: Daniel |
danielkwe@flash.net | Daniels Heart | "My son Daniel is 2 1/2 he has had 4 surgeries all together, and he is doing great!! Good job on this site, it is wonderful that all this information is available to all the new parents with HLHS babies." |
| Michelle P. Harmon Parent of:Zoe |
zoeo@mindspring.com ICQ ID: 2949541 |
Zoe on the web | "Zoe was born 7/8/95 with HLHS. She had the Norwood 7/12/95, Glenn 12/8/95, and the Fontan 5/19/97. She is doing great. Her 02 sats are 97%. We live in Atlanta, GA. USA. She goes to Egleston Children's Hospital, her surgeon is Dr. Vincent Tam, and her cardiologist is Dr. Jane Todd." |
| Mark & Sue Christiaansen Parents of:Phillip | markc@execpc.com | Phillips Homepage | "Our son Phillip is 10 mo. with HLHS, he has had the Norwood and Glenn and is doing very well. This is a great web page for all families and friends of HLHS patients. Keep up the good work." |
| Crystal Young Parent of:Kaitlyn | CrystalMarie@webtv.net |
Kaitlyns page at Left Heart Matters |
"I'm a married 20 y/o. I became preganant w/ Kaitlyn Nicole and was the happiest person on the face of this earth for the whole nine months." |
| Faye Wilson Parent of:Alexander | ad911@seorf.ohiou.edu |
Alexanders page at Left Heart Matters |
"Our son, Alexander Wilson, was born Sept. 12, 1995 in Lancaster, Ohio (USA). He was diagnosed HLHS within 24 hrs of his birth. What follows is his story and how he is fighting through..." |
| Stuart E. Upchurch Parent of:Jason Michael | upchurch@mcs.net | Jasons Page - A tribute to my son | "On this page, my wife and I will tell you about our experiences in delivering an infant who was born with a congenital heart defect, called hypoplastic left heart syndrome. Jason lived for three days." |
| Denise Bashir Parent of:Gabriel Bashir | dbashir@mnsi.net | The Heart of a Child | "Gabriel was born in 1991, when he was born everything was said to be fine." |
| Monica Farrell Parent of:Angela (HLHS) & Nicholas | smlfarr@umslvma.umsl.edu | Angela's page at Left Heart Matters | "When I was five months pregnant Angela was diagnosed with HLHS w/an unbalanced AV canal (in other words, she has a huge hole in her heart which caused the left side not to develop)." |
| Kerrie VanEck Parent of:Jonah | KerrBob@aol.com | Jonah's page at Left Heart Matters | "Jonah has Hypoplastic Left Heart Syndrome. We have chosen to have three surgeries that will completely reconstruct his heart over two years." |
| Scott Leatherland Parent of: Paige | poopers@comsource.net | The Paige Page | "We have written and posted a page for our daughter, Paige. She had a number of problems, not the least of which was HLHS. She lived for only 35 days despite a herculean effort from her doctors." |
| Jeffrey, Carolyn and Chelsea Keefe | chanal@thezone.net |
Chelsea will have a page on Left Heart Matters soon |
"Hi! Our names are Jeffrey and Carolyn Keefe and our daughter's name is Chelsea. We live in Gander, Newfoundland in Canada. Our daughter Chelsea was born two years ago with a number of congenital heart defects, one of them being Hypoplastic Left Ventricle. We were just browsing here on the internet and came across your site." |
| Maureen, Dean, Colin (4 1/2yrs), & Abby (5 1/2mo.) | maureen@editpro.com |
Abigail at Left Heart Matters |
"Our daughter Abigail was born February 20, 1997. She was a perfect 6 lb. 15 oz. little bundle of joy." |
| Ellie and Jon Heinly parents to Jenna 4 1/2, Brendan 8 1/2 weeks | Ellie912@aol.com |
Brendan at Left Heart Matters |
"My husband, Jon, and I were so excited about the baby boy we knew we were having, as we already had a little girl (Jenna, born Feb of 93) and felt our family would be completed, finished, with our addition." |
| Tony & Nancy Lipscomb parents of Stephen Alexander | lipscomb@bellsouth.net |
Stephen Alexander memorial page |
"We have a page/memorial page about our son, Stephen Alexander, who had HLHS. He was born August 21, 1996 and died September 20, 1996. Thanks for your page - it's great!" |
| Kim & David Calhoun parents of Ryan | KMCalhoun@aol.com | Ryan and HLHS | "We live in Morrisville, PA - USA. Please visit our home page to read all about Ryan!" |
| Debbie and Ken Smith Parents of: Jonah Kinnick |
dksmith@XLConnect.com | Jonah at Left Heart Matters | Jonah was born on 2/26/97 at 6:45pm weighing 7lbs 9ozs/19" with dark hard and hazel gray eyes. |
| Robert and Lorraine McDaniels Parents of Nicole, Raychele and Michele. |
LMcdani100@aol.com | Nicole at Left Heart Matters | We found out about Nicole's HLHS during a sonagram at 20 weeks genstation. |
| David Bass Parent of Austin |
dbass@dialaccess.com | I am so glad to hear that there are other "little miracles" out there. We have felt alone. Good luck to all and thanks for the information. | |
| Anna Jaworski Parent of Alexander |
Ajaworski@aol.com | Alexanders Page | Alexander has Hypoplastic Left Heart Syndrome and has had reconstructive surgeries including the fenestrated Fontan. He is doing great! Joseph is a terrific big brother who is also doing super. Why not check out their site? |
| Jennifer & Lance Andersen Parents of McKeely |
Lance.Andersen@gte.net | McKeely at Left Heart Matters |
McKeely underwent a new surgical technique which grows the ventricle to its proper size. |
| Pekka and Maria Aarne Parents of Tea |
pekka.aarne@pp.inet.fi | Tea at Left Heart Matters |
"In Finland the treatment of HLHS children is a new thing. Norwood operations have been done since 1994. Before that time the survival of HLHS patients was impossible." |
| Julie and Patrick Wilson Parents of Evie (UK) |
se77@dial.pipex.com | Evie at Left Heart Matters |
"Evie came into the world on October 24, 1997. She was perfect in our eyes, and I have to say, the eyes of the midwives as well. It was only 12 hours later that we all started to view our precious little baby daughter so differently." |
| Sarah and Les Green Parents of Sophie (UK) |
Lellybabe@aol.com | Sophie at Left Heart Matters |
"Sophie was diagnosed HPLH at Sarah's 21 week scan. It was devastating news but we were given the life-line of the Norwood procedure at Guy's hospital, London." |
| Jason and Gail Parent of Nathan |
gail616@webtv.net | "He was born June, 22 1994. He has had all 3 heart surgeries (Norwood, Fontan, and Glenn). He has a 4 year old sister named Brittany." | |
| Dale Dobson & Nadine Caissy Parents of Kira |
ncaissy@sprint.ca | "HLHS was not detected until after birth. She passed away December 3rd, 1997." | |
| Pat Pearce Parent of Adam |
pat_pearce@medicalogic.com | Adam at Left Heart Matters |
"My son Adam was diagnosed with HLHS and coarctation of the aorta at 20 weeks into my pregnancy." |
| Mike O'Daniel Parent of HLHS child |
qapla@gte.net | "My name is Mike O'Daniel and my son has HLHS. He is now 6 1/2 months old." | |
| Paulette Farmer Parent of HLHS child |
thegiftshop@beaniesandmore.com | Web Site | "We have a web page devoted to our son who has HLHS." |
| Dale & Sheila Sparks Parents of Tye Pereira |
skraps@Alaska.NET | "He will be 9 years old 2/20/89. He has HLHS. He about 6 years post op the Fontan, and he 11 months post op a pace maker implant." | |
| Diana & Bryan Pickard Parents of Emily Nicole |
Pik666@aol.com | "She has had the Norwood and the bi-directional Glenn. We are awaiting the 3rd stage." | |
| David & Candy Parents of Kyle |
CCow738611@aol.com | Kyle at Left Heart Matters |
"I was 18 weeks pregnant when we had are first ultarsound. The OB never told us what he say, but said he questioned the development of the heart, and referred us to a cardiologist." |
| Eric % Judy Neracher Parents of Jeffrey Matthew |
BIGERACHER@aol.com | "Jeffrey Matthew was born on October 8, 1990. Thanks to the team at Children's Hospital of Michigan, he's in first grade now. He had his third surgery (fontan pt.2) almost 3 years ago. He's in great health but there are always new challenges for him. We look forward to contacting parents who have made it this far (beyond #3) and could maybe help us understand what the future may hold for us. Thanks for a great site!." | |
| Stephen & Judith Slobodnik Parents of Laura |
slobodni@interli.net | Laura at Left Heart Matters |
"Laura was born with a complete Atrioventricular canal defect, a small left ventrical, a coartation of the aorta, a small aortic arch and a muscle bar in the left ventricle. Laura also has experienced hydrocephalus and has a shunt." |
| Helen and Scott Heinen Parents of Thomas |
scotthei@tds.net | Thomas at Left Heart Matters |
"Thomas was diagnosed with this two days after birth and we took an emergency flight to Seattle to have the operation. ." |
| Mike and Lorie Strange Parents of Savannah Lou |
mstrange@columbus.rr.com | Mike and Lorie are from Columbus | |
| The Stolz family and Sydney |
Djs5544@aol.com | "Sydney is a 2 yr old HLHS child she also had CoA ..After teh Norwood..Two battles with CHF. Balloon Angioplasty to prepare for the HemiFontan and here we are a year later and things couldn't be better. So happy and "Healthy" If it weren't for the battle scars one could never tell. We were browsing and stumbled upon your page. We like it." | |
| Pat and Mike Lia Parents of Patrick |
PMLia@aol.com | ||
| Conrad and Lena Hildingsson Parents of Filip |
conrad.hildingsson@malmo.mail.telia.com | "We are a family from Sweden. We have translated the booklet to Swedish." | |
| Marci Linn Parent of Jacob Robert Miller |
kbennett@alintserv.com | Jacob at Left Heart Matters |
"Jacob has HLHS-and he has had all three surgeries and is doing very very well!" |
| Matt & Jenny Gindling Parents of Corey |
mgindlin@seidata.com | Corey at Left Heart Matters |
"Our son, Corey Joseph, was born December 3, 1997 at 8:15 A.M. in Madison, IN. He weighed 9 lbs and 5 oz and was 21 inches long." |
| Christopher and Laura Feick Parents of Kyle |
PinkEY1@hotmail.com ICQ ID: is11128160 |
"My son, Kyle, was born with HLHS on 10/21/96. He has been through the first two stages of the corrective surgeries and is doing very well. I didn't have anyone to ask questions about his condition after he was born, and i had sooo many of them. I would love to offer to do this for someone else. I know it would have been a big help to me." | |
| Lisha Seibert Parent of Lucas |
Lpseibert@aol.com | "My son, Lucas (now 11 months old), was born May 27, 1997. We found out the day after he was born that he had HLHS. We were transferred to CHildren's Hospital Medical Center in Cincinnati, Ohio. Dr. Peter Manning performed Lucas' Norwood on June 3, 1997." | |
Registered charity number: 1058735 |