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Name Comments
134) Becky Harden 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; Windows NT 5.1; .NET CLR 1.1.4322)
Thursday, August 19, 2004 09:09 PM Host: h15.13.140.67.ip.alltel.net Write a comment

I am so sorry about your daughter. She was so beautiful. Is there a way of knowing if your child is checked for that disease? I have 2 children, 2years and 5 months old.
133) Monica Richardson 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; Windows NT 5.0)
Friday, July 2, 2004 10:33 AM IP: 204.238.112.250 Write a comment

Like you, I never heard of MCAD until 5 days ago. I, however, am a lucky Mom. I didn't loose my precious Sydney like you lost your daughter Alexis. Sydney, like Alexis has been a healthy child with no medical problems until a few days ago. She was sick and throwing up. Early Monday morning, my ex husband found her awake but unresponsive. He knew something wasn't right and called 911. Luckily the EMTs checked her sugar and saw she had a reading of 23. She was on the verge of death. They gave her a shot of glucose and brought her around. But once at our local hospital test after test was done to figure out why Sydney had gotten so sick so fast. Everything came back negative. Upon the advise of a nurse(also a friend) I had Sydney transported to Vanderbilt Children's Hospital in Nashville. They too began test after test but suspected MCAD all along. It was confirmed yesterday and now I know what to watch for and feel so lucky that I didn't lose my little girl like you did. Your right, this is an easy find but most Drs don't even test for it. I have an older daughter who will be tested very soon to make sure she doesn't also have it. My heart goes out to you.
132) Bree 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; AOL 8.0; Windows 98)
Monday, June 28, 2004 07:47 PM Host: cache-mtc-ab02.proxy.aol.com Write a comment

I came across your site trying to find info on MCADD and am so so sorry for your loss and grateful for your site. It has helped me in so many ways. Thanks for being so brave. My son was born on 6/14/04 and 2 days later we were told he has MCADD. I cant sleep or eat out of fear. My 2 yr old lil girl is being tested and she isn't the best eater and I fear for her as well. I don't know much about MCADD and was wondering if any one out there can help. I have been to doctors and all but I think if I talk to someone who has been in my shoes I could learn so much more. PLEASE
Thank you
-Bree
131) Tim and Lisa Ware 
IP logged Mozilla/4.0 (compatible; MSIE 5.5; Windows NT 5.0; T312461; FunWebProd
Monday, June 28, 2004 05:24 AM Host: gwa3.smurfit.com Write a comment

Thank you for sharing your story with us. We have never heard of this disease, but it is definitely devastating. We have two little ones of our own and will request testing at their upcoming exams. We are so very sorry for the loss of precious Alexis. We can't imagine the loss of a child. Our thoughts and prayers go out to you and your loved ones. Alexis is a beautiful angel now with her wings spread wide. There is no stopping her now! God Bless!
130) Cheryl 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; CS 2000 6.0; Wal-Mart Connect 6.0;
Wednesday, June 16, 2004 06:59 PM Host: spider-dtc-td112.proxy.aol.com Write a comment

I was touched by the story of Alexis and can not imagine your loss. She became an angel on my Birthday. My daughter Anna was diagnosed through the newborn screening when she was 8 days old. I have never been so terrified in my life. I now know how lucky we were to have the diagnosis at such a young age. Anna is now 15 months old and we have been lucky so far with no major illnesses. I just wish that the newborn screenings were required everywhere.
129) Stacy Lloyd 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; Windows 98)
Thursday, June 10, 2004 08:42 AM IP: 151.201.65.107 Write a comment

this is the first time I have been to your site since joining Pediatrix Screening. The stories I read gave me a new perspective to my job of calling out the abnormal results on the newborn screens. I am proud to be a part of newborn screening and saving babies lives.
128) Kathy Pruitt 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; Windows NT 5.1)
Friday, May 28, 2004 11:01 AM IP: 147.182.5.50 Write a comment

She makes a wonderful guardian angel.
127) melissa mori 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; Windows NT 5.1; MSN 6.1; MSNbMSFT;
Tuesday, May 18, 2004 06:00 PM Host: CPE-65-28-66-103.kc.rr.com Write a comment

I first heard about these screenings at an expo and I am so glad that I did since I have a newborn baby that I now know I need to get screened. Thank You so much for informing me. Much sympathy.
-Melissa
126) Marilyn Rose 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; MSNIA; AOL 9.0; Windows NT 5.1)
Friday, May 7, 2004 06:52 PM Host: cache-mtc-ab02.proxy.aol.com Write a comment

I appreciated visiting with you at Baby Expo. My husband and I own Blue Moon Photography in Independence and specialize in babies and children. I would like to get more of your literature to hand out to parents. I'll try to send you some money soon to cover costs. We do about 60 customers per month. How much would you need to cover each months literature? God bless you and your family for what you are doing.
Marilyn
125) Jess 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; Windows NT 5.1)
Friday, May 7, 2004 01:39 PM Host: cache5-brnt.server.ntli.net Write a comment

Aww gosh I am crying me eyes out here.
I am sorry for your loss of your dd.
I have had a m/c at 11 weeks but that is nothing compared to this... I am so sorry.
Bless you and your family.
Jess
124) Valerie 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; Windows NT 5.1; .NET CLR 1.0.3705)
Sunday, May 2, 2004 06:19 PM Host: CPE-65-30-53-137.kc.rr.com Write a comment

I first heard about Alexis and MCAD when my husband, son and I stopped by your family's booth at the Baby Expo in Overland Park on May 1st. I have a 14 month old and am currently 5 months pregnant with his little brother or sister. I had no clue there were any additional disorders to screen for, much less how to going about getting supplemental screenings done. I appreciate your presence at the Baby Expo and the creation of this website informing people about MCAD and NBS in general...I'll definitely be having my newborn tested when he or she arrives in Aug./Sept. and will be ordering a test kit for my son as well since his NBS only covered the required five for Missouri. I've already begun passing on this information to other pregnant friends and family... My condolences to your whole family...Alexis is a beautiful little girl who is obviously well-loved and well-missed!
123) Dave and Staci Ladach 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; Windows NT 5.1)
Thursday, April 29, 2004 05:11 PM Host: pcp02109318pcs.newhav01.mi.comcast.net Write a comment

Your story really touched us because it is very similar to ours. Our son Logan went through a similar bout with MCADD, we thank god that he also pulled through. Our prayers are with you and we hope Kira is doing well. We tried to e-mail but it was sent back, please let us know how Kira is doing and we would be greatful for any helpful advice you may be able to give us.
122) Sunshine 
IP logged Mozilla/4.0 (compatible; MSIE 5.5; Windows 98)
Monday, April 19, 2004 06:36 AM Host: dialup-4.244.141.100.Dial1.StLouis1.Level3.net Write a comment

I am so sorry for your loss of your beautiful daughter (granddaughter). May God bless you and your family.
121) Aleatha S. Rickard 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; Windows 98; Win 9x 4.90; MSN 8.0; M
Saturday, March 27, 2004 10:05 AM Host: 0-1pool132-213.nas2.owensboro1.ky.us.da.qwest.net Write a comment

My son, Levi, was born on 1/19/04 at 33 weeks and immediately began experiencing severe apnea spells. It got so severe that he stayed in the hospital for a week on C-PAP, a feeding tube, IV, & a pH probe to detect reflux. His neonatologist was dumbfounded at Levi having an apnea every minute & decided to do all possible labs. At Levi's next doctor's visit, it was confirmed that he has MCAD deficiency. Levi is now 10 weeks old and is finally smiling & cooing & we are all so glad we finally found out what was happening to him. I read your story about Alexis & it touched my heart, b/c I know how you feel. I am truly sorry about your daughter, & wanted to let you know that even though she isn't with you anymore, she is saving lives--including the life of our little Levi. Thank You, Alexis.
120) pete peterson 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; Windows 98)
Thursday, March 25, 2004 05:57 PM Host: adsl-64-216-142-52.dsl.kscymo.swbell.net Write a comment

I just want to say that we miss you a lot and we pray for her, and hope you feel better
119) Carolyn Cain 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; Windows NT 5.1; .NET CLR 1.1.4322)
Monday, March 22, 2004 07:35 AM Host: HSE-Montreal-ppp102447.qc.sympatico.ca Write a comment

Our thoughts and prayers are with you.
118) Kathy and Katie peterson 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; Windows 98; yie6_SBCDSL; sbcydsl 3.
Saturday, March 20, 2004 07:02 PM Host: adsl-65-69-64-79.dsl.kscymo.swbell.net Write a comment

It seems impossible it has been a year since she left us. We think of all of you often. Katie is still dancing and thinks of Alexis as she dances. Hugs and Kisses Kathy and Katie
117) Kris Smith 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; AOL 9.0; Windows NT 5.1; Q312461; Y
Wednesday, March 10, 2004 10:16 AM Host: cache-mtc-ad07.proxy.aol.com Write a comment

Sweet Angel Alexis, I have been holding you very close in my heart since you've been gone. You have spent every Holiday there is on Earth in Heaven for this past year, and I know your life there is greater than we can ever imagine. We send to you all our love and think about you every single day. As you already know, I ask God every day to give you special hugs and kisses from me, and I know he does. Thank you for being part of our lives, Alexis. I love you. Grandma Kris
116) Leon Smith 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; Windows NT 5.1; .NET CLR 1.1.4322)
Tuesday, March 9, 2004 08:36 PM Host: co-ctlwst-u1-c3b-23.clspco.adelphia.net Write a comment

Thinking of you angel Alexis and your wonderful family. With Love - Leon
115) Karen 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; Windows NT 5.1; .NET CLR 1.1.4322)
Tuesday, March 9, 2004 11:19 AM IP: 64.122.102.94 Write a comment

My heart goes out to you today on Alexis' first Angel Day. She is a beautiful little girl. Know you are in ny thoughts and prayers today.

Hugs,
Karen
^j^ Tia's mom
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