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Name Comments
174) crystal 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; Windows NT 5.1; SV1)
Tuesday, April 12, 2005 06:26 PM Host: c-24-129-203-230.hsd1.fl.comcast.net Write a comment

I am so sorry for the loss of your daughter. I can't even imagine your pain. Reading this site makes me so grateful for my own life. I was diagnosed with reye syndrome at five. My mother tried to wake me the morning after I had suffered from a stomach flu. I was unresponsive. By the time they got me to a hospital I was in a coma. Luckily after a few different attempts to heal me they stumbled upon the right combination and I awoke. My head hurt terribly from swelling but I recovered. However, at that time there wasn't any other test done. I spent thirty years getting sick and being in and out of hospitals. I was constantly tested for diabetes. Now that my seizures have returned a doctor has suggested I be tested for MCAD. I am anixous . I have a seven year old daughter that three times I have almost lost due to unknown illness. All came after vomitting. She will soon be tested as well. Thank you for making us all aware!
173) Cassie Coulter 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; Windows 98; Win 9x 4.90; .NET CLR 1
Wednesday, April 6, 2005 07:09 AM Host: c-24-11-19-148.hsd1.mi.comcast.net Write a comment

My son was diagnosed with MCAD through newborn screening. The news was very devastating. Now that he is 11 months old I feel very fortunate that we know his diagnosis and are able to take the necessary precautions. My heart goes out to the families who were not as fortunate as us.
172) Stacy 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; Windows NT 5.1; MSN 9.0;MSN 9.1; MS
Tuesday, April 5, 2005 09:06 PM Host: 0-1pool211-57.nas17.holland1.mi.us.da.qwest.net Write a comment

Im sorry about your little girl. I put my daughter to bed one night after playing and laughing and chasing each other and woke up to find her dead in her bed. Be happy you had that few days when she was alive to say good-bye.
171) Mandy Dennis 
IP logged Mozilla/4.0 (compatible; MSIE 5.5; Windows 95)
Tuesday, April 5, 2005 05:45 PM IP: 202.72.148.102 Write a comment

Samara Dennis is my niece and I wish to acknowledge her fabulous, dedicated mother who remained calm and positive the whole way through Samara's near death experience. Tracy raves about the brilliant staff at PMH, we are so lucky to have such a great place here in WA.
170) Kris Smith 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; AOL 9.0; Windows NT 5.1; SV1)
Thursday, March 31, 2005 08:23 PM Host: cache-rtc-ab01.proxy.aol.com Write a comment

To those of you who have posted on this site:

I want to personally thank you for sharing your stories, your thoughts and your support. It has been just over two years now since we lost Alexis to undiagnosed MCADD. There isn't a day that goes by that we don't think of her, miss her, and wish we had known then what we know now. I thank God every day that she was (and always will be) such a huge part of our lives. I am a better person for knowing her, and God must love me a lot to have chosen me to be her grandmother.

We are also thankful for this website, and for our brother, Leon Smith, the giving and caring webmaster who has been the guiding light in making this site actually happen. I cannot tell you how much it means to me to know that this site is helping other people. What an awesome tribute to the memory of our precious Alexis!
169) Kris Smith 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; AOL 9.0; Windows NT 5.1; SV1)
Thursday, March 31, 2005 08:22 PM Host: cache-rtc-ab01.proxy.aol.com Write a comment

We are extremely interested in adding the stories of other MCADD children to this site. It is so wonderful when we hear of a child who has been diagnosed and can be successfully treated. I breathe a sigh of relief every time I read one of those happier posts in the guestbook, and thank God for all of those special blessings.

We don't believe that MCADD is as rare as it is currently thought to be, and the more stories we add, the bigger our voice becomes in increasing awareness of the importance of supplemental screening for children of all ages.

So if you have a story you would like to share, but your story is not in our "other family stories" section, please email me personally by going to the "contact us" link. Again, thanks for visiting our site and be sure to pass the link along to everyone you know who has children or grandchildren.
168) Robert Jones 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; Windows NT 5.0; FunWebProducts; .NE
Thursday, March 31, 2005 12:17 PM Host: cacheserver.wbamc.amedd.army.mil Write a comment

Thank-you for having the courage to establish this web-site. We almost lost our youngest son to MCADD, if we had, I am not sure if I would have been able to have the strength to do what you have done for others.
Garrick was diagnosed with MCADD four months after we almost lost him after a hernia operation. He was two years old and was a health baby. The doctors were baffled at what happened to him the morning after the surgery. Seizures and a coma. Fortunately the pediatrician on call gave him d-50 through his I.V. The lab never sent notice up that his glucose was 17........17.
Once he stablized on D-10 IV therapy, he was transfered to another hospital that allowed his blood sugar to crash again to ensure they had proper blood test! We almost lost him again because the blood sugar crashed much faster than they planned.
Four months later we received a briefing from a genetics specialist of MCADD. I almost hit the floor when I learned that 86% of kids diagnosed with this disorder is during an autopsy!
Garrick is now 11 years old and living a very normal life. He has no lasting problems from his blood sugar crashing.
167) Charly Lambert 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; Windows NT 5.1; SV1; FunWebProducts
Thursday, March 31, 2005 07:24 AM Host: 62-249-237-41.no-dns-yet.enta.net Write a comment

hey i do love this poem. it has helped me to see that my nan is up there sum were looking over me. i hope one day my brother will read is poem to and see what i see about it. thank you
charly x
166) Jennifer H 
IP logged Mozilla/5.0 (Windows; U; Windows NT 5.1; en-US; rv:1.5) Gecko/20031007
Thursday, March 24, 2005 03:21 PM Host: adsl-67-65-58-152.dsl.ksc2mo.swbell.net Write a comment

Kelly, I really want to talk with you about an Awareness Campaign I'm doing for Savingbabies.org

I was hoping to see you at the Baby Expo again, but it looks like it's not being held this year.

Please contact me. Thanks! Jennifer
jennifer@jennylous.com
(Formerly Bead Bliss, we met at the show last year)
165) Cami Ponzio 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; Windows 98; Q312461)
Friday, March 18, 2005 08:00 AM Host: c68.117.73.199.roc.mn.charter.com Write a comment

Thank you so much for sharing this information. I am going to talk to my 3 months son's doctor so that we can prevent similar difficulties. Our love continues to be given to your family and your loss.
164) April D. Meisberger (Delameter 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; Windows NT 5.2; .NET CLR 1.1.4322)
Wednesday, March 9, 2005 01:35 PM Host: 69-148-165-162.ded.swbell.net Write a comment

Dear Kelly,

It just so happens that I've had this web address for a year 1/2 and could not find it. I had to take Aubree to the doctor last week (for a cold) and I asked the doctor about it but could not remember what it was called, the doctor had no idea what I was talking about. So I went home and tore everything apart trying to find it. Obviously I did find it and having no idea that today it was 2 years since Alexis passed. I will definately be letting her doctor know what it is and have her tested; and have her spread the word aswell. I'd like to get in touch with you I lost all of my numbers from my cell so please e-mail me. I'd really like to hear from you. I bet Mackenna is getting cuter by the day. I'm sure you could use a little spring R&R and Mushroom season is comming SOON! So get in touch soon.

April
163) Shem and Lizzie Johnsons 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; Windows NT 5.1; .NET CLR 1.0.3705)
Monday, March 7, 2005 03:51 PM Host: id-cralid-cuda1a-51-67.losaca.adelphia.net Write a comment

We too have a daughter with MCADD and have read yours and many others stories on this deadly silent disease. Our daughter was born on April 13,2004 in Cranbrook B.C. and we learned of her MCADD about 1 week after her birth.
A specialist from Vancouver B.C. called my husband and told him to bring our baby straight to Vancouver to do further testing! But we did not understand because she was a beautiful healthy baby. So my husband told her that we wanted a second screening taken first. It came back positive also and the specialist contacted our doctor in Bonners and he did lots of research on it with us. Since he too had never seen a child with this condition in all his practice so far. They told us the main thing we need to do is feed her every 3 hours and if she ever gets sick to bring her in right away so they can give her fluids if she won't eat.
She has got the flu a few times and pnemonia once but we were able to get her on antibiotics and get her well again every time. We have not had to hospitalize her yet. We are very grateful for that. We hope she can stay well and healthy. She is now 11 months old and a very happy baby she is crawling all over the place and almost ready to take off walking. We have read up on most of the stories on this internet about MCADD and our hearts go out to you and your precios Alexis and family. Thanks for all your help!
Love and Blessings,
Shem & Lizzie Johnson
162) Erin Warner 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; Windows NT 5.1; SV1; .NET CLR 1.1.4
Thursday, March 3, 2005 01:53 PM IP: 206.176.96.69 Write a comment

My daughter, Kaitlin (turned 4 in January 2005), was diagnosed with MCAD in August 2004. I came very close to losing my little angel but fortunately she fought very hard and pulled through. I would like to let people know my story because I feel very fortunate to have my MCAD angel with me.
161) Melissa 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; Windows 98; Compaq; FunWebProducts)
Friday, February 11, 2005 08:37 AM Host: S01060060673d102b.ed.shawcable.net Write a comment

Hi, I am sorry about your loss, I am a 20 year old with MCAD. I had found out I had it when I was 4 years old I have good days and I have bad days. To me MCAD is not that serious but I see what happens when you don't know about it and all I can say is I am very sorry for your loss. If you would like any more information plese don't hesitate to e-mail me I will answer any of your questions
160) Margaret Peterson 
IP logged Mozilla/5.0 (Windows; U; Win98; en-US; rv:1.6) Gecko/20040206 Firefox/
Tuesday, February 8, 2005 02:54 PM Host: adsl-65-64-103-17.dsl.kscymo.swbell.net Write a comment

I think of Alexis often
she is an angel of heaven
for I pray once a day, amen
To be struck all of a sudden
there is a whole in my heart
where I thought Alexis was gone
the memories of gold fill that spot
for I had only forgot
she is always there, she is in my heart

Love Margaret
159) christine adamski 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; Windows NT 5.1; SV1)
Sunday, February 6, 2005 05:01 PM Host: pool-70-105-195-112.scr.east.verizon.net Write a comment

A very happy heavenly birthday to your beautiful angel. My thoughts and prayers are with you and your family. God bless. Christine, Grandma to angel Kathryn
158) Kris Smith 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; AOL 9.0; Windows NT 5.1; SV1)
Saturday, February 5, 2005 08:46 PM Host: cache-rtc-ab01.proxy.aol.com Write a comment

Dear God: Please pass this message along for me. "Happy Birthday, Alexis. You are always in my heart, smiling so brightly from Heaven...and especially today, on your tenth birthday, you are very much on my mind. I love you." Grandma Kris
157) Judy A. Mays 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; Windows NT 5.0)
Saturday, February 5, 2005 03:05 PM Host: pcp0010268198pcs.indpnd01.mo.comcast.net Write a comment

What a beautiful poem, never read anything so delicate before. So beautiful
I sit here with tears running down my face. What wonderful strength you have.
156) Yolanda Rogers 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; Windows NT 5.1; .NET CLR 1.0.3705)
Friday, February 4, 2005 06:48 PM Host: proxy4.truevine.net Write a comment

Remembering you and your precious daughter on the eve of her birthday. May our Lord continue to abundantly bless you with His comfort, peace and hope.
155) Chriss Tate 
IP logged Mozilla/4.0 (compatible; MSIE 6.0; AOL 6.0; Windows NT 5.1; FunWebProd
Friday, February 4, 2005 12:31 PM Host: cache-rtc-ab01.proxy.aol.com Write a comment

I am so sorry to hear of your daughters passing. I am very new to this disorder. I just gave birth to my 3 child on nov. 22nd. They did the newborn screening test on her. i found out when she was 3weeks old that something was wrong with the results. They diagnosed her with MCAD. She now makes trips to riley childrens hospital in indy. she has been admitted twice to the hospitalsince shes been born. At 3 weeks old she got pheunmoia. and at 8 weeks she got RSV.. Its been very scary for me. I panic at every sniffle or sneeze. she is now also on the medicine levo-carnitine. she goes again next month to be checked on. Her other 2 sibling are also gonna be checked since now i've learned they can show symptoms of it when there older. i have a 2 year old and a 5 year old also. If you don't mind me asking had she ever acted sick when she was little? i'm now worried about my other children. i'm glad you have this site to make others aware of this. you have helped others by doing this. god bless your little angel.
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