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Name Comments
194) Hedy Faro 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; Windows 98)
Thursday, June 2, 2005 05:26 AM Host: j101185.upc-j.chello.nl Write a comment

Hello, my name is Hedy Faro and I life in the Netherlands. The newborn daughter of my brother is diagnosed with the dissease MCADD. I was looking for some kind of information of this disseas, and I only one say that I'am glad that I now know something more about it. Parents and Family with children with MCADD I wish them al the luck in the world and I hope that there childeren will life a live with happiness and lots off love
greetings Hedy
193) Kelsey R. 
IP logged Mozilla/5.0 (Windows; U; Windows NT 5.1; en-US; rv:1.7.6) Gecko/200503
Wednesday, June 1, 2005 08:27 AM Host: CPE-65-30-111-6.kc.res.rr.com Write a comment

hey alexis,
we were at the state meet is st. louis, mo and that's when i heard the news. one gymnast had won first place all-around and her coach, christy, was crying. blaire, the first place winner, thought they were tears of joy. then she found out that they were tears of sadness.
one day my coach pulled me out of practice for a minute. she asked me if i had. i told her i did and we both started crying. she told me i could sit out or go home for the rest of practice. i didn't want to go home, so i stayed there and watched. alexis was in my pre-team class. i felt like i was so heartbroken. that was one of my saddest days of my life.
192) kelsey reynolds 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; Windows NT 5.1; .NET CLR 1.0.3705;
Tuesday, May 31, 2005 08:59 PM Host: CPE-65-30-111-6.kc.res.rr.com Write a comment

hey alexis
i loved you sooo much. you were such a sweet girl.i miss you soo much.
191) Kassie Reynolds 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; Windows NT 5.1; .NET CLR 1.0.3705;
Tuesday, May 31, 2005 08:33 PM Host: CPE-65-30-111-6.kc.res.rr.com Write a comment

Alexis was a gymnast of one of my past coaches. My coach Christy was devastated when she found out that she passed away. She just wanted to hug everyone at our state meet! I was very sad when I found out even though I did not know her very well. I heard she was a very wonderfull person and I wish I could of known her better. God bless her and her family. Lots Of Love
190) Alyscia L. Bigham 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; Windows NT 5.0; .NET CLR 1.1.4322)
Monday, May 30, 2005 07:13 AM Host: 68.184.225.35.charter-stl.com Write a comment

god bless you and your daughter, I too got that frantic phone call from my babies doctor. Nothing in the world is more presious than our childeren, and no feeling can describe the devistation of that call. we found out when our daughter Emily was four days old. She will be 2 in about a month. She is happy and healthy and the only problem she seems to have is when her sister is eating a donut and she wants one too. Other than that she seems as healthy as any other 2 year old. god bless you , alyscia bigham.
189) Michele Ellison 
IP logged Mozilla/4.0 (compatible; MSIE 5.5; Windows NT 5.0)
Wednesday, May 25, 2005 08:48 AM Host: tch-bcm-nat.texaschildrenshospital.org Write a comment

my grandaughter was born with this. Her sister had just come down with diabetis and my daughter was pregnant and had a mth to go. they took paiges cord blood to hope to have stem cells to one day cure michaelas diabetes,when they did this they tested it for 50 deseases and mcadd showed up. Wow a double blow. But if michaela had not gotten diabetes then we would never have found this out and she may not still be hear. They are very close . they are now 5 and 3 yrs. old. they truly are each otherws angels. Am so sorry for your loss,,God Bless mikey, a gratefull grandma
188) HJ Busch 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; Windows NT 5.1; SV1)
Sunday, May 15, 2005 12:14 AM Host: dc51469dc7.adsl.wanadoo.nl Write a comment

I do feel the pain you must have feld en feel cause of the loss of youre beautiful daughter. Last february we lost are son (3 years and 10 months) because of MCAD. We haven just been told 13 may. We are now very worried for oure daughter who is 2 years and 8 months. In the mean time we've learned that there are no previous signs te recocnize if she has this disorder. We are verry worried that the same could happen again. We are trying to setup a website to help other parents who are confronted with the sudden loss of a beloved one. If you can help us by providing us with usefull internetsites, etc. we would be very pleased. Thank you for sharing you're story on the internet and my condolances.

HJ and Jolanda
187) Donna Salley 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; AOL 8.0; Windows 98)
Saturday, May 14, 2005 06:34 PM Host: cache-dtc-ab06.proxy.aol.com Write a comment

My heart and prayers are with you. I lost my almost 14 month old grandson on March 22, 2005 to mcadd-we are all devasted. please keep your faith through all of this. In His Precious Name, Donna
186) Lauren Rhoad 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; Windows NT 5.1; .NET CLR 1.1.4322)
Thursday, May 5, 2005 04:55 PM IP: 150.199.112.225 Write a comment

I'm sorry for your loss of Alexis Nicole Knapton


Lauren Rhoad
185) Alison 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; Windows NT 5.1)
Wednesday, May 4, 2005 07:14 PM Host: 220-253-122-142.VIC.netspace.net.au Write a comment

I am sorry to hear of your loss but admire you in your efforts to change the health system. I am one of the lucky ones, our two year old son was diagnosed as part of the Australia wide newborn screening program. We have just been discharged from hospital following our first experience with MCAD. My son had severe gastroenteritis but because we had a MCAD diagnosis he was medically managed with a sucessful outcome. After two days in hospital he is now at home and well and truly back to his usual self. Keep up the good work. I just can not understand why this test is not mandatory across Western countries. Something so simple can save so much grief and pain
184) Lacey Peterson 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; AOL 9.0; Windows NT 5.1)
Monday, May 2, 2005 04:14 PM Host: cache-mtc-ab02.proxy.aol.com Write a comment

I am sorry about what happend to Alexis, i never knew her, but she was very nice to every one she knew and to other people she didn't know.
183) Lisa Yokom 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; Windows NT 5.1; CEComet; FunWebProd
Thursday, April 28, 2005 09:02 PM Host: mwst-ae022.cecomet.net Write a comment

I'm so sorry to hear of your loss...I too have lost a child...not to MCAD but none the less know your pain and my heart goes out to you and your family.
Last week I was blessed with the birth of a grandson,Connor he was just diagonsed with MCAD...he's 8 days old..I'm greatful it was found so soon and I am also greatful for your web site which has helped me better to understand MCAD and I will give my daughter and the rest of my family the web site address so that they too may better understand....Thank-you and may God Bless you and yours.
182) Dionne Joordens 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; Windows NT 5.1; YPC 3.0.3; SV1; .NE
Wednesday, April 27, 2005 08:09 PM Host: CPE-65-27-27-225.kc.res.rr.com Write a comment

Love the babies!!
181) jean ambrose 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; Windows NT 5.1)
Monday, April 25, 2005 07:30 PM Host: ip24-252-24-17.om.om.cox.net Write a comment

Your daughter is so radiant and beautiful. Although I didn't know her, looking at her sweet beautiful angelic face made me cry. As the mother of three, I will make sure we have had this test. I admire the work that you have done for this cause. God bless you and your family. May the angels and Jesus hold your precious daughter in their arms until you meet her again.
180) Tayna Parton 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; Windows NT 5.0; .NET CLR 1.1.4322)
Friday, April 22, 2005 10:16 AM Host: midsouth-24-151-201-37.westtn.chartertn.net Write a comment

Thanks for making me aware of this. I am so sorry for the loss of everyone who has lost a child to this horrible thing. There could be no greater pain than losing a child. My thoughts and prayers are with all of you. Thank you again and God Bless
~Tayna~
179) Lauren Rhoad 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; AOL 9.0; Windows NT 5.1)
Tuesday, April 19, 2005 03:22 PM Host: cache-mtc-ab01.proxy.aol.com Write a comment

I'm very sorry for Alexis's passing.
She was one of my best friends.
Me and cassie went to school with her.
The memorial and statue is very beautiful and peaceful. I miss her alot.

P.S.- I wish she was still with us.- and this is cassie's last year to see Alexis's Memorial Garden.


Lauren Rhoad
178) Cassie Glass 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; AOL 9.0; Windows NT 5.1)
Tuesday, April 19, 2005 03:16 PM Host: cache-mtc-ab01.proxy.aol.com Write a comment

I'm so sorry about Alexis.



P.S. I am really sorry


Cassie
177) WENDY PALMIERI 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; Windows NT 5.1; .NET CLR 1.0.3705)
Monday, April 18, 2005 06:30 PM Host: pcp09884244pcs.ewndsr01.nj.comcast.net Write a comment

I AM SO SORRY TO HEAR ALL OF THESE SAD STORIES. MY DAUGHTER ASHLEY IS 5 MONTHS OLD AND APRIL 28TH 2005 WE ARE GOING TO SEE A SPECIALIST. SHE HAD STOMACH FLU THIS EASTER AND SO FAR HER BLOOD WORK IS LOOKING LIKE SHE HAS MCAD. IT IS A SCARY THING AND I WISH ALL OF THE STATES WOULD DO THIS AS ROUTINE NEWBORN SCREENING. MY HEART GOES OUT TO ALL THE FAMILIES WHO HAVE GONE THROUGH SUCH A TRAGEDY.
176) Mandie 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; Windows NT 5.1; SV1; .NET CLR 1.1.4
Friday, April 15, 2005 10:30 AM Host: smsd.org Write a comment

i am so sorry what happened to your daughter and i want to let you know that thanks to you, i had me and my kids tested and thankfully we don't have MCADD. thank you so much. i am trying to talk everyone i know into getting tested so something like this won't happen to them. thank you again so much.

Mandie
175) Annette 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; Windows NT 5.1; SV1; .NET CLR 1.1.4
Thursday, April 14, 2005 06:13 PM Host: pool-70-105-179-36.alt.east.verizon.net Write a comment

Thank you for sharing your beautiful Alexis. I found this web site while reading "Heaven's Child", which I find so bitter-sweet. Alexis' site is filled with so much love, what a wonderful way to honor her memory.

God Bless
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