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Name Comments
314) marlon mangawang 
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Friday, December 8, 2006 05:22 PM Host: fl-71-3-199-4.dhcp.embarqhsd.net Write a comment

Thank you for the wonderful poem that you made.
313) jenny 
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Thursday, December 7, 2006 10:18 PM IP: 144.138.57.31 Write a comment

Our grandson was diagnosed at 3 with MCADD, and he nearly died. He went into a coma before the hospital took it seriously. They sent him home with a glucose drink and told my daughter to feed him properly!! It's a miracle he wasn't brain damaged and is still alive, the doctors told us. They live in christchurch new zealand, where we are moving to next week to support them. God bless you all. jenny
312) Jill 
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Monday, December 4, 2006 03:39 PM Host: pool-72-81-53-132.phlapa.east.verizon.net Write a comment

I first became aware of MCADD when my niece was diagnosed several years ago. She is now a bright, beautiful 16 year old...but only by the grace of God and the brilliance of some physicians and the Duke University community. Your story is heart-wrenching and your poems are beautiful. Keep spreading the word! My husband works for a major pharma company and he had a conversation with a colleague tonight (an epidemiologist) about MCADD. Interest was stirred and the word is spreading, thanks to people like you! Thanks for what you are doing...and blessings to your amazing family.
311) Rhonda Ferguson 
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Friday, December 1, 2006 09:02 AM Host: fadv.com Write a comment

thinking of you. GOD bless
310) Julia 
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Monday, November 27, 2006 01:18 AM Host: c-24-23-32-132.hsd1.ca.comcast.net Write a comment

I am so sorry for your loss. Our daughter tested positive for MCAD via the expanded newborn screening process. I had never heard of it before learning she had it. CA just started routine testing for it seven months ago (she was born 3 weeks ago)
309) Teresa Howell 
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Sunday, November 26, 2006 08:24 AM Host: c-68-58-197-42.hsd1.sc.comcast.net Write a comment

You are awesome. You have turned a tragedy into a quest to better educate our public. I am sure you have or will make the difference in someone's life. Your poems are overwhelming, so full of love yet so full of hurt. I know exactly how you feel to lose a loved one. For so many years I was on the opposite end of that spectrum taking care of the dying and comforting the survivors then suddenly in February I became a survivor and I no longer could comfort. I will pass this website on to all my family and friends. God Bless You. Teresa
308) stephanie vincent 
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Saturday, November 25, 2006 03:32 PM Host: h36.14.31.71.ip.alltel.net Write a comment

I came across your page as I was searching for poems for my father who passed last year from cancer. After reading your story and the poems...I was in tears. I can't imagine anything worse than losing a child. I think that it is such a positive thing that you can put your pain and tears into educating other people about disease that took your daughter from you. My prayers are with you and your family to stay strong and continue to broaden the awareness of this and other childhood disorders and diseases.
307) jill 
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Tuesday, November 21, 2006 09:37 PM Host: cache-mtc-ad09.proxy.aol.com Write a comment

You web site is wonderful. The poems are incredible, and i think it's wonderful that you give info on mcad and how and where to get tested. You are not doing it for your granddaughter's memory, but also so save other people from this. It is a wonderful site. My mother just passed away a few months ago and it pains me still everyday. I cry every day several times. It hurts soo bad, i've changed and i was just searching around for poems (i've always loved poems and writing them) I came about your site.
It captured me right away!! the designs the style. -beautiful
also i have a daughter - only 19 months old and all i thought is i want to grab her and run her to the dr's to get tested. especially b/c she's had flu like symptoms. (it's the season) but now i am worried. I will get her tested though asap.
Thank you for your site. It's a support to others and also informational.
306) Cristina 
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Tuesday, November 21, 2006 07:01 PM Host: ool-44c0bd99.dyn.optonline.net Write a comment

It takes only a minute to get a crush on someone, an hour to like someone, and a day to love someone but it takes a lifetime to forget someone. Dedicated to: Janet Zilinski Aug. 10,2006 God Bless HerO:-) http://janetzilinski.org/

we all are heartbroken. remember when you think of her smile ..
_


xxO
Cristina
305) Mel 
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Tuesday, November 21, 2006 06:50 PM Host: ool-44c0b186.dyn.optonline.net Write a comment

Yeah. I am a friend of Cristina's and we all suffered the loss of a truley WONDERFUL inspiration named Janet. We know she's watching us from above and she's happy. We'll never forget her. R.I.P ~JANET Z.~
304) Cristina 
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Tuesday, November 21, 2006 06:43 PM Host: ool-44c0bd99.dyn.optonline.net Write a comment

hi every one my name is Cristina and i'm 12years old. my friend Janet Z. died about four months ago. She was truly pure and i am happy for her. She's having fun up above.
I'd like to say we misand love her so much.<3
303) Debra 
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Saturday, November 18, 2006 04:02 PM Host: 22-pool2.ras01.den01.dial.cogentco.com Write a comment

I enjoyed this very much. My mother passed away Nov 3rd, 2006. I am looking for something specail for the grandchildren from their Grandmother. Thank you for the inspiration.
302) Kim 
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Monday, November 13, 2006 04:52 PM Host: adsl-64-148-172-53.dsl.wchtks.sbcglobal.net Write a comment

I was just wondering just how many babies have died of Sids that actually had this?I have a 2 month old grandson as far as we know this test wasn't run on him.I am usually up every few hours at night checking on him.I did the same with my girls.I am so afraid of crib death.Is it too late for me to get him tested for this?
301) laura turner 
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Monday, October 30, 2006 02:09 PM Host: cache-los-aa02.proxy.aol.com Write a comment

i have 4 children 3 have mcadd i would like to hear from other familys who have been afected by this.
300) Melissa 
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Friday, October 27, 2006 10:21 PM Host: S01060040ca47ef3b.ed.shawcable.net Write a comment

Hello everyone. I am a 21 year old diagnosed with MCADD when I was 4. It has been a rocky road for me but I have survived and now am blessed with a healthy baby girl. She is 9 months old now and does not have MCADD at all. I just thought I would let everyone know even if you do have MCADD it does not mean your children will get it. And I do not mean to sound rude when I say this but for everyone who calls it a disease it really is not it is just a disorder that you have to learn to live with.
299) Teresa Sparks 
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Tuesday, October 24, 2006 03:51 PM Host: dial81-131-104-53.in-addr.btopenworld.com Write a comment

I havn't written any news here for a while, but do read often. My daughter Sophie, is a real fighter, we've had more downs than ups health wise, but she's a cheeky character and keeps us entertained all the time. Whilst it is hard to constantly be checking her (she also suffers from IgA Deficency - very low immune system)We wouldn't be without her. She certainly has shown us that no matter what life throws at you, grab it by the horns and do the best you can, and enjoy.
298) Anne Marie Bernard 
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Thursday, October 19, 2006 05:32 AM Host: bas1-barrie18-1242373808.dsl.bell.ca Write a comment

I just wanted to thank you for your page and sharing your story. I am an MCAD mom. I have two son's Nicholas and Daniel, both affected and one of my other two son's is a carrier.
Thank you for educating people about the importance of testing. My son presented at 18 months old. He does have some minimal brain damamge and fine motor skill deficits due to lack of oxygen to the brain.
Both of my guys were diagnosed in July of 1991.
I am ALWAYS and forever thankful for their survival, but I know the fear and heartache of what could have been.

*hugz*
297) Susan Wood 
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Sunday, October 15, 2006 02:24 AM Host: host81-159-166-243.range81-159.btcentralplus.com Write a comment

We only found out that the youngest had MCADD through newborn screening that had just started in the UK. Our older child was then tested and ALSO found to be positive for MCADD. Our older child had been VERY lucky to have survived 2 severe bouts of stomach flu without hospitalisation. We thank God every day that he got through them as we all know MCADD can be a silent killer if undiagnosed. My love to all the children and angels with MCADD.
296) Jane Gonzales 
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Saturday, October 14, 2006 09:51 PM Host: 67-150-213-127.sttl.mdsg-pacwest.com Write a comment

I am so sorry to have just read about your daughter...Mine is 10, had a stroke in-utero and we almost lost her 09/01/06 to metabolic acidosis and we go on 10/18 back to metabolic doctor for results and i am scared to death. She always decompensates quickly when ill...
Please know that you and your family will be in my thoughts and prayers and again i am so sorry...
295) Lori Clapson 
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Friday, October 13, 2006 08:35 AM Host: h64-141-124-137.bigpipeinc.com Write a comment

My sympathies in the loss of your beautiful granddaughter, sister, daughter. My son was diagnosed with MCAD through newborn screening. Luckily, he is healthy and strong and fortunately, he has never had a crisis. I am glad that you are sharing your story of Alexis and in doing so, raising awareness about this condition.
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