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Name Comments
54) Jacque Bradford 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; Windows 98; H010818)
Friday, October 10, 2003 06:39 AM Host: co-ctlwst-u1-c3c-246.clspco.adelphia.net Write a comment

Keep up the good work. Saw your article thru NBS email. I too lost a child 13 years ago to MCAD & have a 9 year old with MCAD. I can't imagine finding Alec like you found your daughter right now. Jacque Bradford
53) Hazel L. Riggs 
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Friday, October 10, 2003 06:36 AM Host: co-ctlwst-u1-c3c-246.clspco.adelphia.net Write a comment

I am so sorry about Alexis. The same thing happened to my great nephew at age 2 1/2. May you be blessed as you try to bring some good out of this tragic situation.
52) Lorine Spencer 
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Friday, October 10, 2003 06:35 AM Host: co-ctlwst-u1-c3c-246.clspco.adelphia.net Write a comment

God Bless or sending out this information. I will pray for you and your loss. It is wonderful that you are doing something so positive to help you with your grief.

Best Regards
Lorine
51) Dawn Southall 
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Friday, October 10, 2003 06:34 AM Host: co-ctlwst-u1-c3c-246.clspco.adelphia.net Write a comment

My prayers are with the family of this beautiful little angel. I know her story as her neighbor is my good and dear friend, Pam Montez.
50) Jerry Parrish 
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Friday, October 10, 2003 06:34 AM Host: co-ctlwst-u1-c3c-246.clspco.adelphia.net Write a comment

This was very sad for all of us in the neighborhood. She was a very special little lady and always brought a smile to everyone's face she met.
We still can't help but look for her walking and bouncing down the street taking care of everyone.
We know she is just as special in heaven as she was and still is to us. She is one of a kind and one could not help but love her.
49) Krystena Richards 
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Friday, October 10, 2003 06:32 AM Host: co-ctlwst-u1-c3c-246.clspco.adelphia.net Write a comment

The picture of Alexis on the second poem is absolutely beautiful! She is the most georgous little girl. My 8 yr old son who loves his brothers, who have GAII, really has a tender heart and stared at her picture and I could see the tears in his eyes and then he said, "Mommy, I would have liked her for a girl friend."
It is so hard to believe that a precious face,such as hers, is gone but I reassured Warren that she is with Jesus and is happy and in no pain. She has made it through something, that we all who are still living, have yet to experience. Please keep up her rememberance. I am sure she will never been forgotten but I am sure by your advocating for new born screening with her story, more parents will begin requesting testing long before it becomes mandatory.
Love,
Krystena Richards
Caden 5 yrs GAII
Carsen 16 weeks GAII
Warren 8yrs untested & pretty sure unaffected.
48) Krystena Richards 
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Friday, October 10, 2003 06:29 AM Host: co-ctlwst-u1-c3c-246.clspco.adelphia.net Write a comment

I am so very sorry for your loss. It makes me so very furious that these diseases are not screened for. I cannot imagine losing a child, although we could have several times. We have a 5 yr olds on, Caden, who wasn't diagnosed with MULTIPLE Acyl CoA Dehydrogenase (MADD) OR aka Glutaric Aciduria II (GAII), until he was 4 years old! Please take time to read his story on the link I left above for the homepage. I wish I could change what happened with your darling little girl, but I know it's not possible. I just wanted to offer you my deepest sympathy and let you know that you are not alone. You may contact me anytime for support or prayer. I read no mention of your other daughter having MCAD, so I presume she does not. I will pray for you and your beautiful family.
Many warm wishes,
Krystena Richards
mom to 3 wonderful boys
Caden 5 yrs MADD or GAII
Carsen 16 weeks MADD or GAII
Warren 8 yrs Untested (pretty sure unaffected)
47) Lisa 
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Friday, October 10, 2003 06:28 AM Host: co-ctlwst-u1-c3c-246.clspco.adelphia.net Write a comment

I have a first cousing with MCADD. Luckily, he was diagnosed a few days after he was born since expanded newborn screening is routine in North Carolina. Far too many people (not just children) are walking around with MCADD and don't even know it. I applaud Alexis's parents for all they are doing to get the word out about MCADD. It is one thing to have it and to have been diagnosed with it, but it is a far more serious matter if you have it and don't even know it.
46) Janine Clay 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; Windows 98; H010818)
Friday, October 10, 2003 06:26 AM Host: co-ctlwst-u1-c3c-246.clspco.adelphia.net Write a comment

My heart goes out to you in the loss of your beautiful daughter Alexis. Your pain is shared by many whose children were screened inadequately at birth. Thank you for stressing the importance of supplemental newborn screening to detect MCADD and other life-threatening disorders. May you find some measure of peace in helping to prevent this tragedy in other families.
45) Evangeline Robinson 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; Windows 98; H010818)
Friday, October 10, 2003 06:25 AM Host: co-ctlwst-u1-c3c-246.clspco.adelphia.net Write a comment

May the Lord grant you Peace! Thanks for sharing this information.
44) Theresa A. Murry 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; Windows 98; H010818)
Friday, October 10, 2003 06:24 AM Host: co-ctlwst-u1-c3c-246.clspco.adelphia.net Write a comment

God be with you, and know that now you will see many things differently. Some good and Bad ways.
I lost my daughter to undiagnoised MCAD on 3/16/1998. She was 20 years old and it took them 14 month after her death for them to confirm the diagnosis. I understand your pain. God Bless you and your family.
Theresa
43) Marsena Alley 
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Friday, October 10, 2003 06:23 AM Host: co-ctlwst-u1-c3c-246.clspco.adelphia.net Write a comment

We were so sorry to hear about Alexis and thank you for informing us of this disorder through the website.
Marsena
42) Luke McClain 
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Friday, October 10, 2003 06:22 AM Host: co-ctlwst-u1-c3c-246.clspco.adelphia.net Write a comment

Dear Alexis's Family,

My prayers are with you and your family to be going through such a hard time. Not always do we want to hear that God is in Control and that he has reasons for why this goes on. Whats harder is people who have to go through this and don't know God who gives comfort to those in need. Pam is a second mom to me and I am glad that she is able to be there when you guys needed someone to be an encourager. May God continue to bless you and your family. His Grace is Suffiencent for us. Rest in him and take comfort in him.

IN his loving arms,
Luke McClain
41) Michele Hooks 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; Windows 98; H010818)
Friday, October 10, 2003 06:21 AM Host: co-ctlwst-u1-c3c-246.clspco.adelphia.net Write a comment

Thank you for your site, when I saw it on TV I immediately wanted to make appointments for my kids. I am so sorry for your loss, it is very tough to lose a child and I could not even begin to think of what it might do to me if I did. God bless you.
40) Stephanie 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; Windows 98; H010818)
Friday, October 10, 2003 06:20 AM Host: co-ctlwst-u1-c3c-246.clspco.adelphia.net Write a comment

I would just like to thank you for sharing your story. This was the first time I had ever heard about MCAD and expanded newborn screening. Thank you!
39) Pamela & Monte Montez 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; Windows 98; H010818)
Friday, October 10, 2003 06:18 AM Host: co-ctlwst-u1-c3c-246.clspco.adelphia.net Write a comment

Continued...

I am sure if everyone who saw your love offering in the form of education regarding MCAD, had known Alexis, their understanding, grief and sorrow would be even more heart wrenching. I promise you kids that I will pass this information to every single person by computer and make copies to mail to those who don't have Internet access. I will definitely have my daughter Allison have her sons checked.
I am so proud of both of you kids. I know that you are both Christians and that God and His angels have kept you in their protection. Without God, I don't know how you could have managed to keep going those first few months. We where so worried about you. Your outer strength amazed us. Again, we knew it was God who was holding you up.
I promised both you and Jason that I would pray for you everyday. I have kept that promise. You know that people from all over the country still pray for you and your families. I love all three of you and you know you can always come to us for anything.
Love,
Pam & Monte
38) Pamela & Monte Montez 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; Windows 98; H010818)
Friday, October 10, 2003 06:16 AM Host: co-ctlwst-u1-c3c-246.clspco.adelphia.net Write a comment

Continued from earlier message..

Alexis was so smart and always polite. That was a reflection on how she was being raised by you and Jason. Her award winning smile and cute sense of humor will always live in my heart and memories. I remember so vividly how proud she was when Mikenna was born. She said she was so happy to be a "big sister." As she had gotten off of the bus one day, I asked what her baby sister's middle name was, she said she could not remember. Alexis said she would go ask Mommy. Not two minutes had passed and she was knocking on the door with the answer, Nicole, just like her middle name. She was beaming with pride. I asked how she could sleep at night with that big smile on her face. She was not sure how to answer my question until she figured out it was from the pride her baby sister had brought into her life. Such sweet and innocent memories, I will always cherish each one.
Continued...
37) Pamela & Monte Montez 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; Windows 98; H010818)
Friday, October 10, 2003 06:15 AM Host: co-ctlwst-u1-c3c-246.clspco.adelphia.net Write a comment

Kelly, Jason & Mikenna,
I still cannot find the words to express how saddened I am for you and your families. I still keep Alexis's picture by my computer as a constant reminder to pray for you and I do many times a day. Precious Mikenna's picture sits right next to big sister Alexis.
It still makes me so sad to look in your old back yard and not see the trampoline. I still envision Alexis jumping and doing flips. The smile on her face still brings me joy. I marvel at the pride both you and Jason had while watching her show off her new gymnastic moves. Your smiles and responses of encouragement said it all. So often she would yell at me and asked me to watch. It still makes my heart break.
I see the Shirley Temple movies in the family room that Alexis loved to watch. It is another reminder of how precious she was to me. Monte and I laughed so hard one day while Alexis was here to get a new Shirley Temple movie. She told us that when she went to the movies, she would get popcorn and candy. After that, I had a special hiding place just for her movie candy. I always made sure she could count on that when she would come over. She said it was better than Blockbuster's. Alexis knew how to tug at my heart at every turn.
Love,
Pam & Monte
contiued....
36) Mrs. Sharon Minder 
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Friday, October 10, 2003 06:12 AM Host: co-ctlwst-u1-c3c-246.clspco.adelphia.net Write a comment

God bless you for giving out this important message. My grandaughter is pregnant with her first child and I am giving her your information. If her baby was to be a girl she had the name Alexis picked out. Your daughter is shining from above.
35) Betty Alley 
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Friday, October 10, 2003 06:04 AM Host: co-ctlwst-u1-c3c-246.clspco.adelphia.net Write a comment

Our love goes out to you , Kelly and Jason
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