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Name Comments
374) Dena Barger 
IP logged Mozilla/4.0 (compatible; MSIE 7.0; Windows NT 5.1; .NET CLR 1.1.4322)
Friday, January 11, 2008 11:43 AM IP: 67.76.158.50 Write a comment

I have two children, 2 years old, and a patient sitting in my office telling me her 2 month old grandchild has MCADD. This was found on infant screening.

I will make sure my children are tested for this and as a practitioner, I will make sure my patients are all tested for this through the efforts of people like yourself and my patient, we may be able to make a difference.
373) Lori 
IP logged Mozilla/4.0 (compatible; MSIE 7.0; AOL 9.0; Windows NT 5.1; SV1; FunWebProducts; .NET CLR 1.1.4322; .NET CLR 2.0.50727; Zune 2.0)
Thursday, January 10, 2008 12:27 PM Host: cache-mtc-aa09.proxy.aol.com Write a comment

Hi, My name is Lori, and I do not have a child with this disorder, but leukemia. She has just completed a 2.5 yr. chemo protocol. But, I found this site name from another caringbridge (Navada Zlotnicki). After reading through your story and all that has been done to raise awareness and change the mandated testing, I am in complete awe! God bless all of you who are fighting for this. What at horrendous way of losing a child! No way is good! To Kris, I enjoyed reading your poem, Christmas in Heaven and plan to read the others on this site. Sorry someone was claiming it as their own, that is sad.
God Bless...Lori
www.caringbridge.org/visit/savahanascott
372) Mary Armes 
IP logged Mozilla/5.0 (Windows; U; Windows NT 5.1; en-US; rv:1.8.1.11) Gecko/20071127 Firefox/2.0.0.11
Wednesday, January 9, 2008 06:09 AM Host: 87.113.18.42.plusnet.pte-ag1.dyn.plus.net Write a comment

My cousin's new baby girl has been diagnosed with MCADD at just 13 days old. The family is devastated, but with knowledge they will learn to live with this condition, and Daisy will hopefully lead a full and normal life a life that was denied to you and your family. God Bless you all
371) Mandy Haney 
IP logged Mozilla/4.0 (compatible; MSIE 7.0; Windows NT 5.1; .NET CLR 1.1.4322; .NET CLR 2.0.50727; .NET CLR 3.0.04506.30)
Monday, January 7, 2008 12:28 PM Host: 62.domain.tld Write a comment

I responded earlier about my son Jake. I would love to talk with another parent on this disorder. I have so many questions about what to expect in the future. My email is ahaney@attalla.k12.al.us.
370) mandy 
IP logged Mozilla/4.0 (compatible; MSIE 7.0; Windows NT 5.1; .NET CLR 1.1.4322; .NET CLR 2.0.50727; .NET CLR 3.0.04506.30)
Monday, January 7, 2008 11:00 AM Host: 62.domain.tld Write a comment

My son is 4 months old and was diagnosed with MCADD two weeks after his birth. Please email me and let me know how your daughter is doing. I feel like I live my life constantly worrying about Jake being sick and not eating.
369) Dana Nagel 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; Windows NT 5.1; SV1; .NET CLR 1.0.3705)
Friday, January 4, 2008 11:17 AM IP: 207.229.32.202 Write a comment

Our daughter too died of MCADD. She was 3 days old. Even though testing is mandatory in our province, the test did not come back soon enough. She died 25 minutes after we were discharged from the hospital. I would like to see screening for the pregnant mom, and if positive, screening for the father. Then they could check sugar levels until the newborn test comes back.
368) Jennifer C 
IP logged Mozilla/5.0 (Macintosh; U; Intel Mac OS X; en-US; rv:1.8.1.11) Gecko/20071127 Firefox/2.0.0.11
Friday, December 28, 2007 05:10 AM Host: cpe-76-179-37-202.maine.res.rr.com Write a comment

Forgive me, I thought this was a site for little Joey. This goes to all families out there with children that have MCADD.
367) Jennifer C 
IP logged Mozilla/5.0 (Macintosh; U; Intel Mac OS X; en-US; rv:1.8.1.11) Gecko/20071127 Firefox/2.0.0.11
Friday, December 28, 2007 05:05 AM Host: cpe-76-179-37-202.maine.res.rr.com Write a comment

I have the privilege to know this family personally and let me tell you that Angel is an understatement for Joey. He is a living miracle nothing short of spunky and energetic...full of life.

I cannot stress enough the importance of supporting a family who has a child with MCADD. Ways you can support: Prayer, visiting the family in the hospital, helping with siblings, offering to clean their house or watch children at home, bringing meals to the family or simply calling "Mom" to calm her fears while waiting for a bed in the hospital.

Being a Mom myself, I can only imagine how one must feel when you must fight the hospital system and medical staff to convince them that this is a very real disease and to take one's child immediately upon entering the emergency room. You are your child advocate and accepting nothing less if you don't receive the care expected for a child with MCADD. His/Her life depends on it!
366) Angela Pope 
IP logged Mozilla/4.0 (compatible; MSIE 7.0; Windows NT 6.0; SLCC1; .NET CLR 2.0.50727; Media Center PC 5.0; .NET CLR 3.0.04506)
Thursday, December 20, 2007 07:45 PM Host: c-69-250-95-166.hsd1.dc.comcast.net Write a comment

I lost my mother christmas eve last year I am trying to get through this tough time.. sorry to here about your loss, what a nice poem.. peace and love through the season... Angela
365) Lola 
IP logged Mozilla/4.0 (compatible; MSIE 7.0; Windows NT 5.1; .NET CLR 1.0.3705; .NET CLR 1.1.4322; Media Center PC 4.0; .NET CLR 2.0.50727)
Thursday, December 20, 2007 12:36 PM Host: nansmebas01-pool4-a54.nansme.tds.net Write a comment

this is just beautiful! i just could not imagine lossing one of mine. I adopted my younger brother and six months later my husband and i had twins i pray for your family
364) Carol 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; Windows NT 5.1; SV1; .NET CLR 1.1.4322; .NET CLR 2.0.50727; .NET CLR 3.0.04506.30; InfoPath.1)
Tuesday, December 18, 2007 07:13 AM Host: 66.88.101.130.ptr.us.xo.net Write a comment

This website is just beautiful. I was looking for a poem for a friend who has lost her mother this year. I also lost my father in July and my younger brother in November. It has been a difficult year, but with the grace of God, we will survive. Thank you.
363) Dean Kennedy 
IP logged Mozilla/5.0 (Macintosh; U; Intel Mac OS X; en-us) AppleWebKit/523.10.3 (KHTML, like Gecko) Version/3.0.4 Safari/523.10
Monday, December 10, 2007 02:51 PM Host: host-83-146-15-69.bulldogdsl.com Write a comment

It makes me sad to read about the babies that have been lost to this. My son was the first child in the country to be detected by the trial run screening that was going on at the time. I am so glad they picked it up, and now he's safe and we know what to do ........ He was sick just months after his birth. If we never knew, we would have more than likely lost him ......... thanks to one doctor champion
362) Melody Rose 
IP logged Mozilla/4.0 (compatible; MSIE 7.0; Windows NT 6.0; SLCC1; .NET CLR 2.0.50727; .NET CLR 3.0.04506)
Wednesday, December 5, 2007 12:26 AM Host: adsl-68-74-144-131.dsl.emhril.ameritech.net Write a comment

Its been 4 years today that my lovely little angel left us.Im just starting to deal with the pain I read your poem and have to thank you for the tears. Til we see our angels again, Melody
361) anna kirkpatrick 
IP logged Mozilla/4.0 (compatible; MSIE 7.0; Windows NT 5.1; .NET CLR 1.1.4322; .NET CLR 2.0.50727; .NET CLR 3.0.04506.30; InfoPath.2)
Thursday, November 29, 2007 08:48 AM IP: 204.185.75.130 Write a comment

I went to Southeast Elementary in the fourth and fifth grade. I knew Alexis pretty well. She was my second grade buddy when I was in fifth grade until I moved, and then she was Cierra Bishop's, and then a week later I got the phone call from my friend Jessica, and she told me what happend to Alexis. I started crying. I still can picture her face and the look she had when I said goodbye when I was moving. I miss Alexis so much.
360) Casey 
IP logged Mozilla/4.0 (compatible; MSIE 7.0; Windows NT 5.1; AT&T CSM8.0; .NET CLR 1.1.4322; .NET CLR 2.0.50727; .NET CLR 3.0.04506.30)
Tuesday, November 13, 2007 07:27 PM Host: 241.pittsburgh-04rh15-16rt.pa.dial-access.att.net Write a comment

This is a beautiful poem. I've lost several very dear family members this year. Reading this truly touched me. Thank you so much!
359) Laura 
IP logged Mozilla/4.0 (compatible; MSIE 7.0; AOL 9.0; Windows NT 6.0; SLCC1; .NET CLR 2.0.50727; Media Center PC 5.0; .NET CLR 3.0.04506)
Tuesday, November 13, 2007 12:39 PM Host: cache-los-ae02.proxy.aol.com Write a comment

wow...there are no words! xx
358) Tracey Martinez 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; Windows NT 5.1; SV1; .NET CLR 1.1.4322)
Monday, October 29, 2007 12:17 PM Host: adsl-068-213-182-242.sip.msy.bellsouth.net Write a comment

My granddaughter was just diagnosed with MCAD at 5 days old. Thank God the testing was mandated in Louisiana. I know we have a lot to learn but at least we have that chance.
357) brenda lee 
IP logged Mozilla/4.0 (compatible; MSIE 7.0; Windows NT 5.1; FunWebProducts; SIMBAR={C8B7D70B-093D-4a26-BF5F-06AC0C7F5062}; elertz 2.4.025; SpamBlockerUtility 4.8.4; MSN 6.1; MSNbMSFT; MSNmen-gb; MSNc00; v5m)
Tuesday, October 23, 2007 02:01 PM Host: spc1-salf3-0-0-cust166.bagu.broadband.ntl.com Write a comment

Little Ryan was four when he died last Tuesday. God bless him. He was a wonderfull child, and so brave. Love him lots, brenda
356) Brenda 
IP logged Mozilla/4.0 (compatible; MSIE 7.0; Windows NT 6.0; FunWebProducts; SLCC1; .NET CLR 2.0.50727; Media Center PC 5.0; .NET CLR 3.0.04506)
Monday, October 22, 2007 10:28 AM Host: 74-141-18-147.dhcp.insightbb.com Write a comment

I am so sorry for your lost. Now that they have mandated the newborn screening in Kentucky we are so grateful because my daughter has it. You are in my thoughts and prayers.
355) Marti Raines 
IP logged Mozilla/4.0 (compatible; MSIE 7.0; Windows NT 5.1; .NET CLR 1.1.4322; .NET CLR 2.0.50727; .NET CLR 3.0.04506.30)
Friday, September 21, 2007 03:09 PM Host: 65-255-86-90.dyn.hsi.pldi.net Write a comment

I have a 10 year old with Sanfilippo syndrome, and she is my angel. I wanted to let you know the poems are great. Prayers are with your family
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