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Australian HLHS Information Network - Visitors Book |
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Australian HLHS Information Network - Visitors Book |
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| Name | sheryl ivey | |
| Location | usa, texas | |
| Referred By | Link from another Site | |
| sivey@cableone.net | ||
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Comments |
You have a great site. a lot of info parents could use. I have a son 7 yrs with HLHS. Even though he has had all three surgeries I like to keep up to date on the studies and info on HLHS. | |
| DATE | Wednesday, 14th March 2007 - 05:03 PM | |
| Name | Lisa Williams | |
| Location | Warrandyte Victoria | |
| Referred By | Other | |
| lisa@omnitrade.com.au | ||
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Comments |
Hello we thought we would visit this website in hope to find other families similar and the same to us we are expecting our baby in April 2007 with Hypoplastic RIGHT Heart Syndrome. We are keen to talk to anyone who can share their experiences as we want to be partially prepared and feel the need for support for the challenges that lie ahead. Thank you Lisa | |
| DATE | Wednesday, 27th December 2006 - 02:12 AM | |
| Name | Kerry F | |
| Location | Colac, Victoria | |
| Referred By | A Friend | |
| kerryfennell@dodo.com.au | ||
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Comments |
My son will be 10 in August.
He has HLHS he had a shunt at nine weeks old, after spending the first nine weeks of his life on full life support as he was considered too tiny and ill to recieve a shunt. and had the fontan when he was 4 years old. He remains healthy, happy and active. I remember the dramas, the trauma and the experiences we went through.. thinking we were the only ones. How I wish I could of read these stories and knew of the support group. I have only just discovered you all. Thankyou for the opportunity to discover...We are not alone. | |
| DATE | Friday, 9th June 2006 - 08:06 AM | |
| Name | Cheryl Alexander | |
| Location | Mooroopna, Victoria | |
| Referred By | Support Group | |
| calex@mcmedia.com.au | ||
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Comments |
This is Fantastic. My HLHS son, Jayden will be 8 soon. He is yet to have the Fontan. But, we take it one day at a time. Keep up the great work guys. What a great job you've done | |
| DATE | Tuesday, 31st January 2006 - 07:01 AM | |
| Name | eyleene hancock | |
| Location | londonderry nsw | |
| Referred By | Support Group | |
| EYLPAUL_hearts@bigpond.com.au | ||
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Comments |
my 3.5 yr old Fiona has HRHS ( pulmonary atresia ,intact septum ,hypoplastic right ventricle ,no ASD or VSD ) and i used to wonder why all the extra fuss about HLHS , Dont worry i am much better educated now . We are lucky that she has had surgery , not to fix the problem but to detour it , and currently has sats of 75 - 85 % . My love and best wishes go to all HLHS / HRHS kids and their families , may your future shine like the sun in the sky . | |
| DATE | Thursday, 19th January 2006 - 07:01 PM | |
| Name | Colin Halls | |
| Location | NORTHFIELD STH AUS | |
| Referred By | A Friend | |
| evidhomes@adam.com.au | ||
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Comments |
A very informative site. I want to get info of where I can help or set-up a help unit for people in SA whom have HLHS diagnosed in their child. My 7 month old grandson has HLHS and I need to get info out to the future parents. Our daughter had no info given to her when she was given the news and told to terminate her pregnancy. | |
| DATE | Thursday, 16th June 2005 - 05:06 AM | |
| Name | Donna | |
| Referred By | A Friend | |
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Comments |
You have a wonderful website with so much infor for parents of these "miracle children". Keep up the great work.
A grandparent from USA | |
| DATE | Friday, 27th May 2005 - 01:05 PM | |
| Name | Shari Henry | |
| Location | Missouri | |
| Referred By | Support Group | |
| BillShari3boys@wmconnect.com | ||
| Home Page | http://caringbridge.org/mo/marcus | |
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Comments |
Just stopping by for a visit. My son, Marcus, was born with HLHS, and has had the Norwood and the Glenn. He was born 6/2/05 and is doing well. Heard about you from the Hope For Children With HLHS support group. | |
| DATE | Saturday, 23rd April 2005 - 12:04 AM | |
| Name | Pam & Phil Mckinnon | |
| Location | Ragiwahia, NZ | |
| Referred By | Other | |
| mckinnonclan@msn.com | ||
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Comments |
What a brillant website..
Our little girl Nikki has HLHS, she is now 17 months old and is doing really well. It's nice to know there's others out there that are in the same boat as us. | |
| DATE | Monday, 14th June 2004 - 06:06 AM | |
| Name | Allison Olney | |
| Location | Sydney NSW | |
| Referred By | Other | |
| olneya@bigpond.com | ||
| DATE | ||
| Name | sunni wardell | |
| Location | Ridgecrest CA | |
| Referred By | Support Group | |
| swardell6@hotmail.com | ||
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Comments |
I have a son with dks, av,epalispy and cp. I did everything they said and we still have problems. He is my little angel. | |
| DATE | Wednesday, 7th May 2003 - 12:05 AM | |
| Name | Alison Byrne | |
| Location | Kilmore | |
| Referred By | A Friend | |
| heartkids@heartkids.org.au | ||
| Home Page | http://www.heartkids.org.au | |
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Comments |
This is an excellent support and informtaion site. Well done! | |
| DATE | Wednesday, 25th September 2002 - 12:09 AM | |
| Name | Brenda Vignaroli and family | |
| Location | California, USA | |
| Referred By | A Friend | |
| bvignaroli@aol.com | ||
| Home Page | http://www.heartsofhope.iinet.net.au/jessica/jessica2.html | |
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Comments |
Dear Csaba & Anne-Marie ...
What a handsome little guy Joseph is!! And just look at those eyes!! WOW...ready to take on the world! :0) I am so glad to see that there is alot more information and hope available today than there was when my daughter Jessica was born with HLHS 16 years ago... Jessica and I would like to send our love and prayers out to you and all family's of HLHS/CHD children who are searching..wondering..hoping and living the HLHS reality... We have met up with so many wonderful parents such as yourselves on the Internet...and give thanks to God for those who are willing to share their experiences in bringing other parents and doctors hope and determination for those born with HLHS. Thank you both...and keep on keepin on! :0) Big hugs to Joseph! Brenda,Cara and Jessica Vignaroli (HLHS 16yrs) | |
| DATE | Thursday, 15th August 2002 - 10:08 PM | |
| Name | Shannon Tercheria | |
| Location | Pleasanton, CA. USA | |
| Referred By | Link from another Site | |
| gabecam2001@yahoo.com | ||
| Home Page | http://www.geocities.com/gabecam2001/HLHS | |
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Comments |
Wonderful site! My son Cameron has HLHS, and I'm always glad to discover a new site.
Great work! | |
| DATE | Thursday, 20th June 2002 - 09:06 PM | |
| Name | Kerry and Matt Goodfellow | |
| Location | SA, Australia | |
| kerrygoodfellow1@hotmail.com | ||
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Comments |
our son Thomas was born on 24th sept.'99 he also has hlhs. so far so good. hope all is well. best wishes kerry
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| DATE | Saturday, 4th May 2002 - 07:05 AM | |
| Name | Simone Smith | |
| Location | Melbourne, VIC, Australia | |
| simsmith74@hotmail.com.au | ||
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Comments |
Just being able to hear of Josephs progress is great having met him at RCH when he was so unwell It is great to be able to get hear the untold stories of other cardiac children and thier various conditions depite Nathan having TGA and VSD one can still get support from a wonderful site like this!! Well done guys, keep up the good work Joseph,look forward to seeing you in Melbourne for your next review........oxoxox
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| DATE | Monday, 29th April 2002 - 07:04 AM | |
| Name | Wes & Alexa Jenkins | |
| Location | Bergenfield, New Jersey, USA | |
| wesj@bellatlantic.net | ||
| Home Page | http://www.watchtower.org/library/hb/index.htm | |
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Comments |
Our son Torre was the first HLHS to ta have all 3 procedures performed without the use of blood. His Fontan was also performed in the cath lab without open heart surgery.
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| DATE | Monday, 8th April 2002 - 07:04 AM | |
| Name | Joanne Crisp | |
| Location | Mandurah, WA, Australia | |
| crispies@dodo.com.au | ||
| Home Page | http://www.heartsofhope.iinet.net.au/james/james.html | |
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Comments |
What a special boy Joseph is. We've followed his story and we're amazed by his guts. I know this site can bring hope to those facing this diagnosis in the future. It's not easy but these special babies give so much to all those around them. Joanne Crisp (Mum to James, HLHS, 18 months and with an endless supply of energy)
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| DATE | Wednesday, 3rd April 2002 - 10:04 AM | |
| Name | Deb Rennie | |
| Location | Mandurah, WA, Australia | |
| renren@iinet.net.au | ||
| Home Page | http://www.heartsofhope.iinet.net.au/ | |
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Comments |
Great Job!!! hopefully as we all work together we can make things a little better for those that come after us. I'm sure the journey will be just as tough but to be able to have access to all the up to date information will at least make it easier for parents to know what is available to them. luv Deb Aunt to James HLHS 18months PS...Joseph is looking good!!
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| DATE | Monday, 1st April 2002 - 03:04 AM | |
