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Total Records: 534   Records Viewed Per Page: 20 1 ... 15 16 [17] 18 19 ... 27
Name Comments
214) Kayte Langner 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; Windows NT 5.1; YPC 3.0.1; SV1; .NE
Thursday, August 11, 2005 10:50 AM Host: dialup-4.244.126.249.Dial1.StLouis1.Level3.net Write a comment

My parents were watching Alexis one evening when she was less that a year old. They had cooked a very large bowl of spaghetti noodles. Alexis was enjoying learning to feed herself. She had eaten well but seemed to think the noodles felt great. She decorated the table and herself. When she had had enough of that she crawled into the bowl of pasta and continued playing. The thought of that dinner still makes me smile.
213) lisa cajuste 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; Windows NT 5.1; SV1; SpamBlockerUti
Thursday, August 11, 2005 07:01 AM Host: cpe-065-188-088-224.carolina.res.rr.com Write a comment

Hello.....Your story broke my heart and really touched me since my daughter Ashley is now 8 and suffers from MCADD, seizure disorder and ADHD. I am so sorry for your loss but I appreciate you getting the important information out there to help other families. This is a disorder which can be dealt with when you have the information and know what to look for. I will include Alexis in my daily prayers and I thank you for your courage to get the word out about this disorder!!

God Bless..........

Lisa Cajuste
212) Judy ~ Christopher's Mommy 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; Windows NT 5.1; SV1; .NET CLR 1.1.4
Monday, August 1, 2005 08:18 AM Host: S0106000cf1758139.tb.shawcable.net Write a comment

Your daughter was just beautiful and now she is a beautiful Angel. I'm so sorry that you have had to go through this. As a SIDS Mom I have some idea of your pain and I am also pushing for Newborn Screening here in Canada. Ontario sadly only tests for 2 disorders, PKU and CT, we are hoping that they will at least begin to test for MCADD. Thank you spreading awareness about this disorder ~ I suspect that that is what my son died of however, it was 32 years ago and they didn't do testing then. Again, thank you. Hugs, Judy
211) Kris Smith 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; AOL 9.0; Windows NT 5.1; SV1; .NET
Sunday, July 31, 2005 07:53 PM Host: cache-mtc-ab02.proxy.aol.com Write a comment

I am always so glad when I read in this guestbook that someone's child has been diagnosed through screening. The State Alexis lived in, Missouri, is now screening for 29 known genetic disorders at birth (instead of the 4 it previously screened for). This went into effect on July 1st of this year. Any child in Missouri born before July 1, 2005, did not automatically get the comprehensive screening. We are now starting to work on Kansas, which currently screens for only 3 disorders at birth. Again, thanks to all of you who visit this website, and for helping us to spread the word about how important it is to have children of all ages screened. We appreciate all you have done and continue to do to help increase awareness of this disease. ~Kris Smith, Alexis' Grandma Kris
210) nicole alexis 
IP logged Mozilla/4.0 (compatible; MSIE 5.01; Windows NT 5.0)
Saturday, July 30, 2005 10:44 AM Host: user-6161.l3.c2.dsl.pol.co.uk Write a comment

hi my name is nicole alexis and it is very sad to her about alexis nicole hope u keep safe luv ya xxxxxxxxxxxxx
209) cera tiffany 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; Windows NT 5.1; SV1; .NET CLR 1.0.3
Wednesday, July 27, 2005 02:28 PM Host: CPE-69-76-161-179.kc.res.rr.com Write a comment

Sorry about what happened and I hope Mikenna stays healthy. Love Ya.
208) Alyssa Sweet 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; Windows NT 5.1; SV1; .NET CLR 1.0.3
Wednesday, July 27, 2005 02:10 PM Host: CPE-69-76-161-179.kc.res.rr.com Write a comment

Love Ya
207) randi sanders 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; Windows NT 5.1; SV1; .NET CLR 1.1.4
Saturday, July 23, 2005 06:02 PM Host: ppp151.eld.centurytel.net Write a comment

kelly,i was just thinking about alexis. i just wanted to tell you that i miss her so much. I think about her everyday.
206) Autumn McMullin 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; Windows NT 5.1; SV1; .NET CLR 1.1.4
Sunday, July 17, 2005 01:54 PM Host: CPE-65-26-20-137.kc.res.rr.com Write a comment

I miss you Alexis! I loved you soooooo much! You have made other people aware of this disease. Now they can screen their babies!
205) Autumn McMullin 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; Windows NT 5.1; SV1; .NET CLR 1.1.4
Saturday, July 16, 2005 08:52 PM Host: CPE-65-26-20-137.kc.res.rr.com Write a comment

I love this site! I will visit it many times and tell people to come here to be aware of this deadly disease.
204) Kelsey Reynolds 
IP logged Mozilla/5.0 (Windows; U; Windows NT 5.1; en-US; rv:1.7.5) Gecko/200411
Thursday, July 7, 2005 08:25 PM Host: CPE-65-30-111-6.kc.res.rr.com Write a comment

Hey Kris and Kelly,
this is kelsey reynolds.for some reason i was just thinking about alexis and i immediatly went to her website.this site is sooooooo sad but it brought back alot of good memories alexis and i had together.i am probably going to get one of the mcadd bracelets on her site.i miss alexis soooo much and im sure you wonderful people do too.tell mikayla that alexis would have been a wonderful big sister.
Kelly~I love your poem that you made for alexis called Precious Alexis.it brought me to tears.
Kris~I'm glad im getting to talk to you on instant messenger.i hope i can get to know a little bit more about you.have fun doing your work while i play games.lol.you guys are such wonderful people.maybe i will catch you again on instant messenger.
Your Friend,
Kelsey Reynolds
203) Toni VanCleef 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; AOL 9.0; Windows NT 5.1; .NET CLR 1
Tuesday, July 5, 2005 01:32 PM Host: cache-dtc-ab03.proxy.aol.com Write a comment

My Cousins Son is 2 and a half months old and has MCADD. Right now he has to eat every 3 hours, I am his babysitter so I was trying to get as much info as I can on MCADD. I am sooo sorry that you lost your daughter and I think its great what your doing to let people know about this. Thank you for having this website.
202) JERRY & STEPHANIE 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; AOL 8.0; Windows NT 5.1; .NET CLR 1
Sunday, July 3, 2005 04:02 PM Host: cache-rtc-ab01.proxy.aol.com Write a comment

We are truely sorry to hear about your loss of Alexis. We too have a son with MCAD. He was diagonsed during his newborn screening. We live in Indiana and it seems we have two good doctors at Riley Hospital for Children. I pray for all families and children with this disorder. I think there should be some kind of list of families with children with this disorder. It would be nice to talk to other families.
201) Jason 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; Windows NT 5.1; SV1)
Wednesday, June 29, 2005 04:25 AM Host: 203-134-3-242.cust.syd.iprimus.net.au Write a comment

I am so very sad for your loss. Your stories and poems brought tears to my eyes. I almost lost my son Cameron to MCAD. Day 4 he presented and after a number of near death experiences eventually results came back from new born screening and the doctors knew what to do. My wife and i watched as our son fought so bravely but a disease that attacked again and again, finally after nearly 7 days of his life in the balance he came out of it. We love him sooo very much and appreciate each and every day - he is a lovely boy even when he doesnt want to eat! I still feel those dark days and i feel your loss deeply. All mine my wife and Cams love to you all and to all children who are everything.
200) Jamie Curry 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; Windows NT 5.1; SV1; .NET CLR 1.0.3
Sunday, June 26, 2005 06:34 PM Host: h66.169.213.151.ip.alltel.net Write a comment

Florida does not have expanded newborn screening, & at 2 days old, I could not get Emily to eat. I kept calling her pediatrician, & they kept telling me that she was jsut a sleepy baby & to keep trying things to get her to wake up. I could not succeed at waking her up.it had been 12 hours since Emily had anything to eat. I then could not wake her up at all. I called the dr. & told them I was bringing her in right then. When we got to thier office, her tempurature was 89.0 degrees. She was dying. We immediately had an ambulance take us to the nearby childrens hospital. We didn't know for 2 & 1/2 weeks if she was going to live or die. By the 3rd week, the doctors told us that she did have a chance of living, but they were still uncertain of what happened to her that made the levels in her body be so off. They saved her life. We brought her home after the 4th week, not knowing what was wrong with her, & being completely paranoid about the whole situation. 2 weeks later, The Genetics professor at The University of Florida called me and said he would like to send Emily's dna off for testing of this disorder called MCAD. I said ok of course. It came back positive. I almost lost my little girl. When we arrived to the hospital, she was in a coma. They saved her.I thank God every day that I have Emily & I pray every day that we can treat this deficiency and let her live a long, happy life.
199) Mimi Garza 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; Windows NT 5.1; SV1; YPC 3.2.0; ypl
Sunday, June 26, 2005 09:07 AM Host: adsl-68-94-58-195.dsl.rcsntx.swbell.net Write a comment

Our story is Very similar to Alexis..Isaac had gastroenteritis and we called an ambulance because he was lifeless and shaking. That was last Saturday..we spent 7 days in the hospital and a diagnosis of MCADD was confirmed 2 days ago. My son is 17 months old and has another unrelated genetic condition called Russell Silver Syndrome it is a form of dwarfisim that requires a high calorie/high fat diet because he is below 3% on the growth charts. We are going to a metabolic specialist on Tuesday to learn about MCADD. We were very lucky that Isaac doesn't have any damage (MRI came back normal). I am also 27 weeks pregnant and they will do the extended newborn screen since my baby girl is at risk. Thank you so much for your site..I have read the stories and it has helped me.
198) Linda S. 
IP logged Mozilla/5.0 (Windows; U; Windows NT 5.1; en-US; rv:1.7) Gecko/20040803
Saturday, June 25, 2005 01:16 AM Host: 71-34-241-249.eugn.qwest.net Write a comment

May God Bless Alexis, her family and all other MCCAD children and their families.
I pray that more people will become aware of this horrible disease and that there are screening test available for proper diagnosing, Also, I pray there will be a cure in the Near future.
Bless these innocent Little Children!

Linda
197) Melissa Swanson 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; Windows NT 5.1)
Monday, June 13, 2005 08:25 AM Host: ip70-178-177-247.ma.dl.cox.net Write a comment

I am desperately seeking answers right now. My 5 year old presented with what the doctors called non-ketotic hypoglycemia. They never found out what was causing it. Now, today, my 2 year became unresponsive. I immediately recognized the symptoms and checked his blood sugar. It was only 42! What do I do? Why would this happen to both of my children? Could it be this MCAD?
196) Annette Albright 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; Windows NT 5.0; Hotbar 4.1.5.0)
Wednesday, June 8, 2005 07:22 AM Host: sc215019.robins.af.mil Write a comment

I am sorry to hear of your heart breaking loss. I am one of the lucky ones as my daughter was diagnosed at 9 months after 3 very severe episodes. Sierra is now 8 and wonderful. She has issues with school but we aren't sure if it is due to the episodes she had as an infant or because of ADHD.
195) Amber - Angel Randa's Mom 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; Windows 98)
Sunday, June 5, 2005 04:04 PM Host: pmc-d06.weir.net Write a comment

My thoughts and prayers go out to you and your family. I'm very sorry for your loss - Alexis is such a beautiful little girl.
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