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Total Records: 534   Records Viewed Per Page: 20 1 ... 21 22 [23] 24 25 ... 27
Name Comments
94) DEBBIE HILL 
IP logged Mozilla/4.0 (compatible; MSIE 5.5; Windows NT 4.0)
Friday, December 5, 2003 08:11 AM Host: app-ftp.windsorgroup.com Write a comment

I LOST MY GRANDSON TO THIS AWFUL DISEASE MCADE. I AM A VERY ANGRY PERSON AND HOPE AND PRAY THEY DO A TEST FOR THIS MANDITORY WHEN A BABY IS BORN. I THINK THIS NEEDS TO GO TO THE PRESIDENT OF THE UNITED STATES. WE DO ALOT FOR OTHER COUNTRIES AND DO NOT EVEN DO THIS FOR OUR BABIES.

DEBBIE HILL
93) Louise Thurlow 
IP logged Mozilla/4.0 (compatible; MSIE 5.5; Windows NT 4.0)
Tuesday, December 2, 2003 03:31 PM IP: 63.117.200.4 Write a comment

I was very sorry to hear Alexis' story. My Jenny and Lisa were at Jenn's daycare so we knew Alexis. Thank-you for creating this website. It is very important to let people know what screening is available at a nominal charge.
God Bless,
Louise, Steve, Lisa and Jenny Thurlow
92) Robin 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; Windows 98; Compaq)
Monday, December 1, 2003 06:25 PM Host: 1Cust85.tnt1.tupelo.ms.da.uu.net Write a comment

Alexis is just beautiful. Thank you for creating this wonderful website. It is an active, loving tribute to these children who would be alive if they had received appropriate newborn screening.
91) tracy reamy 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; Windows NT 5.1; (R1 1.1); .NET CLR
Tuesday, November 25, 2003 06:03 AM Host: sdn-ap-003neomahP0293.dialsprint.net Write a comment

My 10 year old son Tucker became an angel the same day as your beautiful daughter. I came to your site through heavenly lights. Thank you for sharing her story and for your effort to fight "lesser known" diseases. Tucker also died of a rare genetic disease called adrenoleukodystrophy. I am also leading a fight for more testing so other families don't have to experience the surprise and pain that we have.
90) Melissa Cummings 
IP logged Mozilla/4.0 (compatible; MSIE 5.5; Windows 98; Win 9x 4.90)
Monday, November 24, 2003 07:21 PM Host: 32-85-syr-ny.dialin.a-315.westelcom.com Write a comment

I can only thank God and those responsible for their persistance in requiring NY State to have more comprehensive Newborn Screening. Our 7 month old daughter, Shawna Cummings, was diagnosed with MCADD when she was only 4 weeks old. After much denial, guilt and uplifting spirits of other we have accepted and have learned how to take every day as if it is the most special day ever. Shawna goes to a specialist every other month and we modify her diet. She is healthy and happy in every way. We realized that had we not discovered this so early we may have lost her forever. Her first episode was the first immunization shots she received. Due to the fact we knew how to treat her temperature and her burning up her glucose so quickly we were able to make it through the episode with no damage. I can only thank those of you responsible for saving my little girls life. Also I am writing a letter to send to all Congressman, newspapers, and magazines all over the country to help in Newborn Screening awareness. Thank to everyone. If anyone would like to communicate, you can reach me at mndcummings@yahoo.com
89) Phyllis, sister to Angel Taryn 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; AOL 8.0; Windows NT 5.1; {Cablevisi
Saturday, November 22, 2003 01:47 PM Host: cache-mtc-ag01.proxy.aol.com Write a comment

I am so sorry to read of the death of your precious little Alexis. My own little sister, Taryn Danielle Thomson, died after falling in our pool on June 14, 1998, so I know some of the pain you feel over Alexis's death. She is a beautiful little girl, such a pretty smile. It is a shame that one simple test could have saved her...
I think it is wonderful, the things you are doing in her memory, letting people know this diesese exists. I know I've never heard of it. Have you ever thought of making a "alexis's law", which would require testing for mcad?
once again, I am terribly sorry for the loss of your sweet angel. I know though, that she is now playing with Taryn in the golden streets of Heaven. They are watching over us always.

<33 and ((Hugs)),
Phyllis
Sister to Angel Taryn
3/24/1994 - 6/14/98
88) Diep Nguyen 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; Windows NT 5.0)
Saturday, November 22, 2003 06:25 AM Host: ip68-227-218-135.dc.dc.cox.net Write a comment

I am so sorry for your loss. Just know that your beautiful daughter's memory is helping educate many about this disease and could help prevent another uncessary loss of life. Because of her, I will have my baby tested when he is born in March 2004 and will also have 14 month old tested soon. Thank you so much.
Love,
Diep
87) Jazzmine Anderson 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; Windows 98; Win 9x 4.90)
Tuesday, November 18, 2003 08:17 PM Host: CPE-65-28-69-61.kc.rr.com Write a comment

I feel sorry for Alexis.But know she is still in your heart. Thats one place, she'll always be. I'm 9 years old and I thank you for letting other people know about this disease,that could save other kids lives. I will pray to Alexis before I go to bed every night!!To tell her everyone here is thinking of her.I will ask all of my friends at school to pray for her also.God bless you and your family.Alexis is always going to be your angel,in every way,here and in heaven.
86) Margaret Peterson 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; Windows 98; yie6_SBCDSL; sbcydsl 3.
Tuesday, November 18, 2003 07:56 PM Host: adsl-66-142-54-28.dsl.kscymo.swbell.net Write a comment

I saw it on T.V. tonight and I am so glad you are inspiring people to screen there love ones as well. I think of her every night before I go to bed. I am so glad that the law has been passed and screening will now take place in MO. Miss you Love Margaret
85) Katie Peterson 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; Windows 98; yie6_SBCDSL; sbcydsl 3.
Tuesday, November 18, 2003 07:38 PM Host: adsl-66-142-54-28.dsl.kscymo.swbell.net Write a comment

I saw you on tv tonight and mome told me about the website. I really like the poem you wrote. I think of Alexis often.
I took her picture with me last week when I performed with the Moscow Ballet. I miss her and you. Love Katie
84) Athena Eaton 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; Windows 98; Win 9x 4.90)
Tuesday, November 18, 2003 07:37 PM Host: CPE-65-28-69-61.kc.rr.com Write a comment

I just wanted to write to you to tell you your family is in my familys prayers. I really wish horrible things don't have to happen for things like this to be found,it is so scary!!!! I am going to have my son tested now and my daughter, I thank you for making sure other people know about this disease. I hope and pray you and your family stay strong,and you'll stay in our prayers!!!!!!! Athena Eaton and family
83) Misty 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; AOL 9.0; Windows NT 5.1; .NET CLR 1
Monday, November 17, 2003 11:32 AM Host: cache-rp04.proxy.aol.com Write a comment

Thank you for antering your story in the Park Hill Progress. I heard your story on the news and have often thought of you and your loss. I live close to you and at the time had a 2nd grade daughter so this is really too close to home. More than anything I just wanted to let you know there are others thinking and praying for you. I think it is great that you put your story for others to read. The news never comes back and lets us know why. We, {the public},think flu and without you we wouldn't know the truth. Give your new baby lots of kisses and always keep her sisters memory alive.
82) The Lasswell Family 
IP logged Mozilla/4.0 (compatible; MSIE 5.0; Windows 98; DigExt; YPC 3.0.3; yplu
Friday, November 14, 2003 10:39 PM Host: ppp-66-140-92-57.dialup.kscymo.swbell.net Write a comment

Although you don't know me, my heart goes out to you and your family. God bless you.
81) Jean Dyer 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; Windows 98; FunWebProducts)
Friday, November 14, 2003 08:55 PM Host: h-68-167-2-79.LSANCA54.dynamic.covad.net Write a comment

Hello. Your little grandaughter is so beautiful. I;m sure she gave you many hugs and kisses and is now in the arms of Jesus. One day you'll see her and until then we must carry on. We lost our oldest grandson July 6th and he was only 18. He was our pride and joy. We do have his brother and my son's daughter and son which we're greatful for. Josh was sure a precious gem and was so kind to every one. We never say him loose his temper or get mad at anyone. Do take care and know ;you're in my prayers for healing.
Jean
80) Tiffany 
IP logged Mozilla/4.0 (compatible; MSIE 5.5; Windows 95)
Friday, November 14, 2003 07:00 AM IP: 205.204.242.21 Write a comment

I'm so sorry to hear about your little girl, just remember she is in a better place now where MCADD can't hurt her.
79) Angel Pernice 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; Windows 98; Win 9x 4.90)
Thursday, November 13, 2003 07:43 PM Host: 168-103-205-198.dlls.qwest.net Write a comment

My thoughts and prayers are with you and your family.
78) Jessica DiBernardo 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; Windows NT 5.1; Roadrunner)
Thursday, November 13, 2003 05:12 PM Host: CPE-24-163-146-123.kc.rr.com Write a comment

Kelly and Jason,
What a great tribute to your beautiful daughter Alexis. I know you wish you were never put in this situation, but how you chose to handle it is amazing. I know your message will help save many children. Thank you!
Jessica (Heather's sister)
77) April Harris 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; AOL 8.0; Windows NT 5.1; .NET CLR 1
Thursday, November 13, 2003 02:28 PM Host: cache-rp04.proxy.aol.com Write a comment

Hello, your Precious Little girl is so pretty and such a pretty smile she has. You don't know me but I came across her site on another angel site. I to know what you are feeling as we lost our litte princess in Aug. even though she had been sick all her life and we knew that one day it would happen the way it did wasnt suppose to happen and its still so hard and we are dreading Christmas so bad . I know like ourLittle Princess she was the light of our lives and lite up each and everyday . we will keep you nd your family inour prayer each day that one day you may also have the answers to Why God? as do so many other parents. God Bless you all
April Harris
76) Frank & Sarah Cox 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; Windows 98; Roadrunner)
Monday, November 10, 2003 04:17 PM Host: CPE-65-30-110-22.kc.rr.com Write a comment

I just want to say Thank You for sharing your daughter's story with everyone. We have a 5 year old & I didn't know anything about this until I happened upon your site. I am truly sorry you had to experience the loss of your daughter. In sharing this story with others, hopefully it will ease the pain a little knowing that you saved another childs life.
75) BRYAN AND LAURA PERRY 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; AOL 7.0; Windows 98; Win 9x 4.90; .
Saturday, November 1, 2003 06:23 PM Host: cache-dq08.proxy.aol.com Write a comment

WE WERE TRULY BLESSED TO BE APART OF ALEXIS' LIFE.
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