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Name Comments
354) Kaci 
IP logged Mozilla/5.0 (Windows; U; Windows NT 5.1; en-US; rv:1.8.1.6) Gecko/20070725 Firefox/2.0.0.6
Monday, September 17, 2007 06:35 PM Host: pool-71-117-176-246.ptldor.dsl-w.verizon.net Write a comment

My daughter who is now almost 3 years old, was diagnosed at birth. When we got the second screen done they said it came up negative. Luckily the doctors at Dorenbecher's Hospital didn't back down. They did multiple blood tests, and sent them to multiple places. It wasn't until the very last genetic/blood test that they finally confirmed it. We have taken her to get IV's almost once a year. I am lucky, her levels have never dropped during sickness. My doctors have said they don't know how biochemistry is working into the genetic disorder yet. I was glad to read your website, because it reminds me that I need to always be aware with her. It only takes one time. I will always be praying for all these families and know that their stories are saving my baby's life.
Thank you
353) suleika 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; Windows NT 5.1; SV1; .NET CLR 1.1.4322)
Sunday, September 16, 2007 08:46 AM IP: 24.139.165.128 Write a comment

This is beautiful. I have a two year old daughter with this disorder.
352) Rebecca 
IP logged Mozilla/5.0 (Windows; U; Windows NT 6.0; en-US; rv:1.8.1.6) Gecko/20070725 Firefox/2.0.0.6
Friday, September 14, 2007 06:56 PM Host: c-69-136-208-9.hsd1.pa.comcast.net Write a comment

S I M P L Y B E A U T I F U L
351) Tricia Burns 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; America Online Browser 1.1; Windows NT 5.1; {EC426258-3525-2BF6-1EA8-431657651B80}; .NET CLR 1.1.4322)
Tuesday, September 11, 2007 08:51 AM Host: pool-71-242-58-251.phlapa.east.verizon.net Write a comment

I was wondering if any other parents are experiencing what we are here. My son and daughter both have MCADD. My son is having other medical problems and his doctors are telling me that the two are not related. He is having severe muscle problems after exercise or sports to the point that he's down for three to five days. If anyone else w/ mcadd kids are experiencing this please contact me for a chat. We are at our wits end without a diagnosis.
350) Malary Richardson 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; Windows NT 5.0; .NET CLR 1.1.4322; InfoPath.1; .NET CLR 2.0.50727)
Sunday, September 9, 2007 01:20 PM Host: slip-12-64-18-165.mis.prserv.net Write a comment

My little sister Sydney Richardson has MCAD deficiency. We first found out when she was 4 years old. we thought she just had an upset stomach at first. When i woke up the next morning I found her unresponsive. MCAD almost took her life. Thanks to the great doctors at Vanderbilt she is now ok, but on medicine the rest of her life.
349) Cindy Robert 
IP logged Mozilla/5.0 (Macintosh; U; Intel Mac OS X; en) AppleWebKit/419.3 (KHTML, like Gecko) Safari/419.3
Sunday, August 26, 2007 01:15 AM IP: 76.209.220.212 Write a comment

Our family just lost a child to MCAD. She was my little niece, just 3 days old, and because of such an early onset she wasn't diagnosed until she had passed. Her life has saved others. Thank you for this website and we grieve together.
348) Victoria Rordam 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; Windows NT 5.1; SV1; .NET CLR 1.0.3705; .NET CLR 1.1.4322; Media Center PC 4.0)
Wednesday, August 22, 2007 08:18 PM Host: h460eb6dd.area3.spcsdns.net Write a comment

I have a 6 weeks old premature baby boy with MCAD Deficency. Anything we should know please advise.....
Thank you so much.


Victoria Rordam
347) Marley 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; Windows NT 5.1; SV1; .NET CLR 1.0.3705; .NET CLR 1.1.4322; Media Center PC 4.0)
Thursday, August 16, 2007 01:20 PM Host: lkvlmsnas01-pool0-a223.lkvlms.tds.net Write a comment

My brother died in May of 05 and in July I found out that I was expecting. In March of 06 I had my son,Braxton. When he was four days old his pediatricain called us and tolled us that he had MCADD. We are very lucky that he was tested because I really feel that we would not have him with us today if he would not have been tested.
346) Jamie 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; Windows NT 5.1; SV1; .NET CLR 1.0.3705; .NET CLR 1.1.4322; Media Center PC 4.0)
Wednesday, August 15, 2007 07:02 PM Host: c-71-60-6-77.hsd1.pa.comcast.net Write a comment

I pray every day for the children with MCAD. My son was diagnosed with MCAD at 4 days old. I thank GOD every day and know that we are very lucky to know that he has this. I was not even aware that he was being tested for this, but I am so glad that he was. He is now 6weeks old and doing great.
345) Michelle Walters 
IP logged Mozilla/4.0 (compatible; MSIE 7.0; AOL 9.0; Windows NT 5.1; .NET CLR 1.1.4322)
Monday, August 6, 2007 01:02 PM Host: cache-dtc-ab12.proxy.aol.com Write a comment

Thank you so much for posting your sweet girl's story. We recently got a diagnosisi of MCAD for our youngest daughter who is 2. We have seven children, and are now getting them all tested this week. I appreciate your candor, and pray you strength and comfort for the loss of your sweet angel.
344) Eric Bowen 
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)
Friday, July 20, 2007 05:34 PM Host: c-69-242-139-153.hsd1.mo.comcast.net Write a comment

I came across your site in the first week of Feb this year when my four day old son, Ellis, was diagnosed with MCAD. I was searching for any answers or any explanation of what MCAD was when my doctor told me the news over the phone. Your site made us feel extremely grateful for the standard blood-screening process that caught Ellis' disorder. Reading the accounts of individuals who had MCAD and had lived healthy lives due to early detection helped calm us and better enabled us to take the steps to care for our child. Ellis is doing just fine these days. He will be 6 months on August 1. His mom and I despite many long days and nights with feedings every 2.5 hrs for 3 months are doing fine. His feedings are every 4 hrs now which seems like an eternity to us. I came across your site again and felt the need to email my thanks to you and emailers for the community you've developed. Thank you so much.
343) Tricia Carriere 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; Windows NT 5.1; SV1; .NET CLR 1.1.4322; .NET CLR 2.0.50727)
Thursday, July 12, 2007 11:13 AM Host: bas6-kitchener06-1177626631.dsl.bell.ca Write a comment

Bless your hearts for this website!
342) Michelle Sydow 
IP logged Mozilla/4.0 (compatible; MSIE 7.0; Windows NT 5.1; .NET CLR 1.1.4322)
Thursday, June 21, 2007 08:21 AM Host: 71-36-254-108.chyn.qwest.net Write a comment

I have three MCAD children aged 7, 5 and 4 1/2 months. I became aware of my children's condition after my baby's newborn screen. They only started screening in Wyoming in July 2006. He was born in January 2007. We are very fortunate that we are now able to treat the children to hopefully avoid any tragedy.
341) stuart o'may 
IP logged Mozilla/4.0 (compatible; MSIE 7.0; Windows NT 5.1; .NET CLR 1.1.4322; IEMB3; IEMB3)
Tuesday, June 12, 2007 11:18 AM Host: 82-41-165-142.cable.ubr02.linl.blueyonder.co.uk Write a comment

great web site to get awareness of mcad.i hsve 3 beautiful daughters aged 6,4,2 who all have mcad.the oldest was diagnosed at 18 mths and the other two at birth.hard work with regular hospital visits but all worth while.thanx for setting up web site.
340) Eileen Quinlan 
IP logged Mozilla/4.0 (compatible; MSIE 7.0; Windows NT 5.1; .NET CLR 1.1.4322)
Tuesday, June 5, 2007 11:33 AM Host: c-76-24-89-19.hsd1.ma.comcast.net Write a comment

Hello,
My name is Eileen and I have a daughter with a rare metabolic disorder called Beta Ketothiolase Deficiency. I was searching the web for sites on awareness bracelets and came across your site. What a BEAUTIFUL little angel Alexis was. Just adorable! My daughter Olivia is now 2-1/2 and doing well. Thankfully they detected her through NBS, first ever to be screened for this disorder, only 50 people world wide have it. I wish you and you family well and your in my prayers! Stay strong as you seem to be doing!

Sincerely,
Eileen Quinlan
339) Tricia Burns 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; Windows NT 5.1; {EC426258-3525-2BF6-1EA8-431657651B80}; .NET CLR 1.1.4322)
Thursday, May 10, 2007 04:42 AM Host: pool-71-242-85-220.phlapa.east.verizon.net Write a comment

I have two children with MCADD ages 13 and 16. Life has not been average, its been a roller coaster ride. Newborn Screening didn't happen for us back then, we learned the hard way. AJ got sick and stopped breathing. God had other plans for my son and brought him back to us. My daughter was diagnosed shortly after. The doctors told us there was no clinical reason your children are still alive today with all the other problems they've encountered in their first three years of life. We take each day as it comes and thank God every night. If anyone needs to talk I am always here to listen.
338) Katie McVan 
IP logged Mozilla/4.0 (compatible; MSIE 7.0; Windows NT 5.1; FunWebProducts; .NET CLR 1.1.4322)
Wednesday, April 4, 2007 09:18 AM Host: c-71-230-109-51.hsd1.pa.comcast.net Write a comment

I just wanted to say that I am very sorry for your loss. As I was reading your story it brought tears to my eyes as I have MCAD myself. I was actually the 1st case ever diagnosed with it back in 1981 when I was only 13 months old. I couldn't imagine what my parents went through until I had a daughter of my own. Due to the newborn screening tests we were able to detect it. She is now 4 1/2 and doing very well but it has been and still is a struggle. Due to the newborn screening test that struggle is possible. So I just wanted to send my prayers and tell you that what you are doing by reaching out and making other parents aware is fantastic.
337) Stacie Couture 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; Windows NT 5.1; SV1; .NET CLR 1.1.4322)
Friday, March 23, 2007 01:37 PM Host: pool-72-65-105-212.ptldme.east.verizon.net Write a comment

Thank you for making this website. It made me realize I wasn't alone with my son's diagnosis. My son is a healthy 4 year old boy who has, thankfully, never had any hospitalizations. But sometimes I wonder if anybody really knows about MCAD. He does see a metabolic specialist who lives 4 hours away, every 6 months to make sure all is well!!
336) hannah peterson 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; Windows NT 5.1; SV1; .NET CLR 1.1.4322; .NET CLR 2.0.50727)
Saturday, March 17, 2007 07:13 PM Host: CPE-75-81-107-221.kc.res.rr.com Write a comment

this has brought back so many memories, happy and sad. please tell Margaret when the kansas Newborn Screening law is passed.

god took her for a very speacial reason
335) Hannah 
IP logged Mozilla/4.0 (compatible; MSIE 7.0; Windows NT 5.1; .NET CLR 1.1.4322; .NET CLR 2.0.50727)
Wednesday, March 14, 2007 09:04 PM Host: 71-209-103-20.dvnp.qwest.net Write a comment

I lost my 2 day old son to MCADD. He was screened for MCADD but he passed away before the test came back. I feel your pain. No one should have to lose a child..God Bless
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