| Name |
Comments |
| 456) |
melinda |
| roxanne94@yahoo.com |
Location: ga |
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My mom just found out to day that my little adopted sisters son 1 week old had mcad We live so far apart I'm not much help.Im searching for information to try and understand .Thank you for the web sight and God Bless you.
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| 455) |
Jaime Jensen |
| Jaime@wayupnorth.net |
Location: St. Paul, MN |
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Thank you and God Bless you and your whole family! As a mother of a son who has MCAD and found out through newborn screening, I praise your work and thank God for your beautiful little girl. Thank you!
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| 454) |
TRACY BROWN |
| DOCHERTY609@BTINTERNET.COM |
Location: GLASGOW, UK |
|
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I HAVE A DAUGHTER WHO IS NOW 14YRS OLD AND WAS DIAGNOSED WITH MCAD WHEN SHE WAS JUST 2YRS OLD SHE IS DOING SO WELL NOW AND I AM SO PROUD OF HER, SHE STILL HAS A FEW MINOR HEALTH ISSUES BUT WE CAN LIVE WITH THAT. SHE IS A STAR.
|
| 453) |
Steve Anderson |
| lex_stanson@hotmail.com |
|
|
Annabelle is now 17 months old and was diagnosed with MCADD at 2 weeks old. First 6 months were hard (feeds every 3hrs) and we had a few trips to hospital but just during her first year when she occasionaly wouldn't eat or was sick. Touch wood the last 6mths have been great and if she doesn't eat much we give her a bottle in the night with some Polycal. She's just had Chicken Pox and although she didn't eat much we just gave crispy snacks, raisins and little tastes along with regular Polycal.
She has a big sister (3yrs) who doens't have MCADD and the 2 are inseparable.
We're now trying for Baby #3 and know that she too may get MCADD but that's not stopping us (and why should it)
God bless you all and for those just finding out their children have this - don't panic or read too many horror stories on the Internet because it just makes you cry or feel terrible. Focus on the great times you'll have and by knowing the protocol to follow when your child is sick you can avoid tragedy. Available on email if you need someone to talk more - Steve (father of Annabelle who has MCADD)
|
| 452) |
Brian Middleton |
| bmiddleton@laborready.com |
Location: Kansas City Missouri |
|
|
My granddaughter Bridget who is a week old toady and my first grandchild, was diagnosed with MCAD today. It is heart breaking to read these stories of such beautiful children. I'm hoping that there are some encouraging stories out there? Bridget is my heart and she has brought so much joy into her families life over the last 7 days. God bless all of you and I will keep you in my prayers! Brian
|
| 451) |
sarah |
| sjlowther999@btinternet.com |
Location: England |
|
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Hi my daughter has just been diagnosed with MCadd at 11 days old. i am so scared of what condition involves and how to spot any danger signs. this site is great to know there are other people out there with MCADD. any advice would be great.
|
| 450) |
john linneman (scuba) |
| heyscuba@charter.net |
|
|
Sorry for your loss,...
This is a song I wrote about losing a family member, and a friend of mine wrote book and put my song in it,... I hope you enjoy it,... (there are 2 version, and the words are at the bottom of the page)
http://www.pushingleavestowardsthesun.com/the-family-tree-by-john-scuba-linneman
John (scuba) Linneman
|
| 449) |
Dottie |
| shellandshawnmom@yahoo.com |
Location: MS |
|
|
I am so sorry for your lose of your beautiful granddaughter. I know it has been several years but that doesn't lessing your pain any. I lost my 28 yr old son in May so we are still going thru the first year of our greiveing and it doesn't seem to be getting any easier.
|
| 448) |
tracy |
| tslong2006@yahoo.com |
Location: us |
|
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this is beautiful. I also lost a daughter, she just turned 5. She is missed everyday.
|
| 447) |
christine marshall |
| marshall5@hotmail.co.uk |
Location: UNITED KINGDOM |
|
|
i have a son he is 4 now who was born with mcadd he been in hosp 15-20 times since birth and i almost lost him so meny times i thank every day that i have him and i thank the docs at st thomas hosp who look after him all the time.my heart gos out 2 all u lovely people who has lost some one u love.
|
| 446) |
Georgia |
| carebear_25_2005@yahoo.com |
Location: WVA |
|
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Thank you so much for sharing your story on this web site I have read every word on here , and you have touched my heart in so many ways . Dec 25,2007 I losted my bestfriend who was my grandmother and I never thought that I could face life without here her , everyday goes bye its still hard but I know with Gods help I will make it .. I am so so sorry for your loss of your precious little girl... My thoughts and prayers are with you always ... Love & Prayers Georgia
|
| 445) |
Grace |
|
|
|
 Tuesday, December 1, 2009 08:37 PM Host: 97-112-120-186.dlth.qwest.net
I am so so so deeply sorry. I lost my dad a couple of months ago unexpectedly. He developed a condition called Acute Respiritory Distress Syndrome and was on life support for 10 days before we had to make the decision to take him off of it. It was a tramatic and devestating experience for me. I am only 21 and he was only 57. It is the worst feeling in the world to lose someone so close so unexpectedly and it leaves wounds that will never heal completely. My thoughts are with you this holiday season.
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| 444) |
Jacque Canady |
| jcanady@ocic.k12.ok.us |
|
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First grandson just diagnosed with MCADD. The hospital screening detected the high count. I had never heard of it. Anxious to find out more information. I'm sorry for your loss, and I appreciate that you are working for awareness.
|
| 443) |
heidi wood |
| bgdiana2@yahoo.com |
Location: jacksonville fl |
 |
|
hello my name is heidi and my daughters name is diana marie diana was diagnosed with mccad at 2 days old i had to get up every 2 hours for the first year of her life it was tough it was verry hard to deal with when she was young now shes 5 and doing realy well thanks for this page it is great to share something that is so rare
|
| 442) |
DanielleB |
| danielleburnett@mchsi.com |
|
|
Hello my name is Danielle, my husband and I just found out that our 4month old son (Cameron) has MCAD. We are so scared but also thankful that we found out before he got sick. Thank for this sight we can use all the info we can get.
|
| 441) |
Thomasina Alexander |
| tmariagirl@yahoo.com |
Location: camby, in |
|
|
I am so very sorry for all of the families of these children! I had never heard of this. Do they consider this a Mitochondria Disease? My son, Braydon, passed away in November of 2008 of what they believe was a very rare Mitochondria Disease/Metabolic Disorder. He was only 20 days old. My heart goes out to all of you because I understand the pain of losing a child. It's the worse thing ever!!!
|
| 440) |
Debby DeLabio |
| e4deb@cox.net |
Location: Phoenix AZ |
|
|
My daughter Breanna was diagnosed at 9 months. She is now 18 and looks forward to getting married and having children one day. It scares me because I cannot find any information on how MCADD presents in pregnancy. Does anyone have this kind of information?
|
| 439) |
Anne |
| valkyrie_blu@hotmail.com |
Location: Columbus Ohio |
|
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I am a mom of 7 grown kids with 13 grandkids all are healthy so far..I am blessed... I am so sorry for the loss of your beautiful and shiny star...May her story help to save many children's lives... thank you very much Much love Anne
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| 438) |
Jon |
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 Friday, September 18, 2009 06:40 PM Host: FL-ESR1-208-102-136-194.fuse.net
God Bless you and your family
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| 437) |
John Schanilec |
| military_daddy@yahoo.com |
Location: Right now Kuwait |
 |
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This poem is lovely. It was sent to me by my fiancee whos child would have been 19 today. He has been and still is sadly missed since cancer had taken him from us almost a year ago. Thank you for shareing this poem with all who see it.
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