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| Name: | dave and anne |
| Email: | canada |
| HomePage: | |
| Where are you from: | |
| Comments: | We have been checking your site.. We have lost our own daughter to glutaric on April 21 2007.. and she was with us for 7 wonderful yrs.. and she taught us alot about love and caring for other people.. She opened our eyes to her adventures... things that we take for granted, as the poem says... take care.. the poem says it all.. God Bless.. |
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| June 22, 2008 02:56:47 (GMT Time) |
| Name: | Emie Bon |
| Email: | Singapore |
| HomePage: | |
| Where are you from: | |
| Comments: | I understand howyou feel, as I have patients experiencing severe spasms of the limbs although they are not GA1 patients.they are on artane and baclofen but after awhile they claimed that it doesn't work anymore.I'm a nurse by the way,,I am very sorry for your daughter and for your family too for her loss.I'l be praying for you. |
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| June 21, 2008 22:52:30 (GMT Time) |
| Name: | Elaine Townley |
| Email: | U.K. |
| HomePage: | |
| Where are you from: | |
| Comments: | Thank you. I was drawn to your site in an attempt to decipher the term'Glutaric aciduria' that I read on my grandson's MRI scan. And people waste money on wars ! |
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| June 21, 2008 15:11:36 (GMT Time) |
| Name: | Nathan & Mendy Somers |
| Email: | Canada |
| HomePage: | |
| Where are you from: | |
| Comments: | New parents, going through tough times... |
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| June 19, 2008 23:59:22 (GMT Time) |
| Name: | Ashley Jones |
| Email: | Tennessee |
| HomePage: | |
| Where are you from: | |
| Comments: | I'm so sorry for your loss.. I was visiting your site because i was doing research on many different illnesses in the United States.. and I just wanted to see if your site could be any help to me.. Once again, I am terribly sorry for your loss.. |
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| June 19, 2008 17:53:31 (GMT Time) |
| Name: | carlaworkman |
| Email: | Idaho usa |
| HomePage: | |
| Where are you from: | |
| Comments: | my daughter is having seizures they can not explain why, just doing some research. |
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| June 18, 2008 16:45:24 (GMT Time) |
| Name: | Debra Pope |
| Email: | Australia |
| HomePage: | |
| Where are you from: | |
| Comments: | I am sorry to read how sick your daughter was. It is hard to really know what to say in times like this that doesnt seem stupid. Except that my prays are with you and your family ... In this world it saddens me that children have to suffer the way that they do as we can still not find cures for everything... |
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| June 18, 2008 05:33:59 (GMT Time) |
| Name: | Lisa I. |
| Email: | Michigan, USA |
| HomePage: | |
| Where are you from: | |
| Comments: | A good friend's child was recently diagnosed with GA-Type 1. While researching on the internet, I came across your website. Thank you for the information and insight. I am so sorry for your loss. |
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| June 13, 2008 02:07:19 (GMT Time) |
| Name: | Kevin Thomas |
| Email: | Danville, Illinois |
| HomePage: | |
| Where are you from: | |
| Comments: | |
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| June 5, 2008 16:03:05 (GMT Time) |
| Name: | ANDREA BERRY |
| Email: | MAXTON,NC 28364 |
| HomePage: | |
| Where are you from: | |
| Comments: | Hi this is andrea and I have two kids with GA-1 and i have it a little ruff now and then and my little gile aliyah had a stroke and seizure at 10 mths old and shes doing better she just turned 6 in april and my little man is 3 1/2 will be 4 in october he had a seizure christmas of '05 and lost all control of everything also he will get his wheelchair in the secind week of june both my kids have feeding tubes I thank god that he gave them to me and I sorry to here about your loss but I know shes an angel, she has always was one!!!! take care if you write back write me at drea_dragon@bellsouth.net |
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| May 29, 2008 23:55:44 (GMT Time) |
| Name: | Tara Brown |
| Email: | Australia |
| HomePage: | |
| Where are you from: | |
| Comments: | My son is 21months old and has GA1, He is being treated by the medabolic team at westmead Childrens hospital, Sydney NSW |
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| May 14, 2008 13:03:29 (GMT Time) |
| Name: | Barbara Koss |
| Email: | Wisconsin |
| HomePage: | |
| Where are you from: | |
| Comments: | My neice has Glutaric Aciduria type 1 also. It's a very scary thing to think that I might one day loose her. I love her with all my heart. My thoughts and prayers go out to you and your family! |
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| May 9, 2008 16:44:56 (GMT Time) |
| Name: | mick moylan |
| Email: | dublin |
| HomePage: | |
| Where are you from: | |
| Comments: | i was very saddened to hear of allisons death.i cannot imagine the pain you must feel.i have 3 children with ga1 and not a day goes by without me thinking about the loss of one of them.there are days i cannot function and nights i cannot sleep.to overcome this i work as much as i can .like allison they are 3 of the bravest kids any parent could ask for,for what they have to go through each day to live.i hope some day you find serenity |
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| May 8, 2008 22:29:26 (GMT Time) |
| Name: | Rebecca May |
| Email: | Arkansas |
| HomePage: | |
| Where are you from: | |
| Comments: | my daughter Ashlie also passed away on April 23, 2006 from this same disease... She lived 14 years with it, My sympathys go out to you and your family as I know the affect this has on families.... |
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| April 22, 2008 04:27:07 (GMT Time) |
| Name: | Lily Tomuli |
| Email: | Living in France but Originally from New Zealand; |
| HomePage: | |
| Where are you from: | |
| Comments: | I am very sorry for your loss! But I have been googling all sorts in relation to the metobolic disease. I am still learning as my niece has this. She is a perfect healthy little girl & then next she was having ceisures. Her 1st one was at 4months, she was put on medication, forgotten what its called, but its to prevent her from having another one. She had been on it for 4months & my sister had to gradually reduce her doses in order to take her off. My sister requested this as also it could harm her because it is very strong, & each time she had to have blood tests to make sure the doses given were ok. It had only been a week when she was weaned off it, & she had another ceisure, but longer than her other ones to the point where her lips went blue. I know how terrifying it is, & I really feel for my neice which is my godchild too. Just some advice on whether to leave it to the paediatrics or go straight to a specialist who deals only with this. We are sick of second hand info, & someti |
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| March 29, 2008 22:22:55 (GMT Time) |
| Name: | Sue Clark |
| Email: | Flint Michigan |
| HomePage: | |
| Where are you from: | |
| Comments: | I'm so sorry to hear and red about your daughter. My neice just had a baby and he has GA-1 so i'm just trying to find more info. |
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| March 29, 2008 01:48:47 (GMT Time) |
| Name: | Rob Stephens |
| Email: | Texas |
| HomePage: | |
| Where are you from: | |
| Comments: | We are thinking the GA1 is a possibile diagnosis for our daughter and are searching for information. So sorry to hear of your loss. |
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| March 25, 2008 19:04:13 (GMT Time) |
| Name: | ryan monias |
| Email: | st. theresa point |
| HomePage: | |
| Where are you from: | |
| Comments: | i jus recieved information that my son was diagnosed with ga1 and i am very confused i dont know what to todo he is only 3 weeks old. it is very hard for me to accept that he got this thing. |
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| March 11, 2008 06:27:12 (GMT Time) |
| Name: | Diane |
| Email: | Dallas, Tx |
| HomePage: | |
| Where are you from: | |
| Comments: | I lost my 7 month old daughter suddenly and it was first thought SIDS. After an MD did extra pathology tests, he felt she had Glutaric Aciduria. My husband and I never had any tests to determine if indeed we were carriers so her death still is a mistery to us as we are not fully convinced that she had this disorder, as she was not sick a day in her 7 month life. When I read the stories of the children with this disorder, I am grateful that if she did have this, she did not go through what others have gone through. I hope this does not sound selfish but it breaks my heart both ways. God Bless.... |
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| February 26, 2008 18:54:24 (GMT Time) |
| Name: | Caryn Hoffman |
| Email: | Boston,ma |
| HomePage: | |
| Where are you from: | |
| Comments: | I am so so sorry for your loss, Allison was an amazing child. as I sit here writing this crying, since we just found out that our 4 mth old son has ga1. Im in complete shock right now, and really dony quite understand this disorder. |
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| February 26, 2008 13:54:25 (GMT Time) |
| Name: | Jackie Jennings |
| Email: | Normal Illinois, USA |
| HomePage: | |
| Where are you from: | |
| Comments: | my daughter is 18 months old, we found out that she had GA1 about a week after we brought her home from the hospital. Her health has gone back and forth between stable and illnesses and at the age of one she already has had ear tubes put in because of chronic ear infections. I worry every day about her health and worry that there is nothing i can do to ensure that she will be okay. I am very sorry for your loss and will pray for your family every day, same to anyone else who has had to deal with losing their child to this terrible disorder. God Bless. |
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| February 25, 2008 05:20:27 (GMT Time) |
| Name: | Kate O' carroll |
| Email: | Co. Meath, Ireland |
| HomePage: | |
| Where are you from: | |
| Comments: | I'm so sorry for your loss. My 3 little cousins have GA1. They are doing well. |
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| February 18, 2008 13:11:54 (GMT Time) |
| Name: | melissa |
| Email: | www.glutaricacidemia.org |
| HomePage: | |
| Where are you from: | |
| Comments: | Hello, We have currently updated our website. After transferring all of our information, I was reading through Allison's story. I am so sorry that she passed away. Please know that IOGA'S thoughts and prayers are with you. If there is any new information that you have learned and wish to share with the IOGA community, please let me know. Thank you, Melissa Anesin/melissaanesin@yahoo.com |
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| February 12, 2008 02:16:09 (GMT Time) |
| Name: | T.A. Stepanian |
| Email: | The Netherlands |
| HomePage: | |
| Where are you from: | |
| Comments: | My grandson has Glutaric Aciduria I and we're scared stiff that he might get any infection, that would release our worst nightmares. He is so far highly intelligent and fantastic kid, but cannot walk properly and will need soon a wheelchair. |
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| February 7, 2008 16:44:48 (GMT Time) |
| Name: | gdshaw |
| Email: | rochester ny |
| HomePage: | |
| Where are you from: | |
| Comments: | it gives me great pleasure to read ur story i was given this topic as a project because i am currently in a lpn program i hope that you and your family are coping with everything and hopes that god bless you 10 folds for your courage to put your story here for the world to gain knowledge i personally thank you take care |
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| January 25, 2008 03:37:37 (GMT Time) |
| Name: | Melinda Ryves |
| Email: | Muskegon, Michigan |
| HomePage: | |
| Where are you from: | |
| Comments: | My child just was diagnosed with the GA1 and is a very big blow in the face with everything else he endured. it is alot to take in and am trying to understand evertyhing i am so sorry of your loss and i dont think people dont really understand until you have a child and you go through it with them. If you can have any info or suggestions for me i would love to hear them sincerly melinda in michigan my email addy is melindaryves@hotmail.com |
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| January 23, 2008 21:09:13 (GMT Time) |
| Name: | beverly chambers |
| Email: | houma, louisiana |
| HomePage: | |
| Where are you from: | |
| Comments: | this is the first time that my family and I have heard of this diease. glutaric acidemia |
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| January 22, 2008 01:45:20 (GMT Time) |
| Name: | LaKisha Butler |
| Email: | Philadelphia Pa |
| HomePage: | |
| Where are you from: | |
| Comments: | My 6 month old son was diagnosed with GA-1 at 7 days old. I'm worried all the time about what the future will hold for him. Although he has reached most milestones I'am still very concerned. I'm very sorry to learn about Allison,but am glad that you have shared this information. If you could contact me at kekenb25@hotmail.com maybe we could work together so research could be done for a cure. I'm scared to lose my son, and the doctors give me very little hope. I wish you and your family the best,and hope all those experiencing this disorder within a child can band together. Much love to you and yours, LaKisha Butler |
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| January 12, 2008 05:45:53 (GMT Time) |
| Name: | Layne Lombardi |
| Email: | Raleigh, NC |
| HomePage: | |
| Where are you from: | |
| Comments: | I am praying for peace for your family. My daughter is eleven months old and has been in the hospital since the day she was born. She had a very traumatic birth and suffered brain damage and kidney failure. We recently transfered her to Minneapolis, MN to prepare for a kidney transplant. She will be getting my kidney as soon as she is big enough. Her newborn screen showed her as possibly having GA1 but we brushed it off thinking it would be impossible considering everything else she has been through. Today it was brought up again because her test results are still raising red flags. We are now facing a GA1 diagnosis along with so many other problems. Thank you for sharing your story. There is no better knowledge than what another mother or father can share with you about their experience. I am so sorry for your loss. Sincerely, Layne Lombardi LayneT2@yahoo.com |
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| January 4, 2008 23:01:47 (GMT Time) |
| Name: | nancy |
| Email: | sonora, CA. |
| HomePage: | |
| Where are you from: | |
| Comments: | Please email me if you have any information. nancy_k_morton@sbcglobal.net |
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| January 1, 2008 17:20:46 (GMT Time) |
| Name: | NANCY |
| Email: | SONORA, CA. |
| HomePage: | |
| Where are you from: | |
| Comments: | MY DAUGHTER HAS A SON, 7 MONTHS OLD, DERRICK WAS DIAGNOSED WITH SHAKEN BABY SYNDROME. NOW THROUGH GENETIC TESTING HE IS IN THE PROCESS OF BEING REDIAGNOSED WITH THIS DISEASE. I AM SURE SORRY ABOUT ABOUT YOU LOSING YOUR LITTLE GIRL. ARE THERE ANY PARENTS OUT THERE WHERE THE CHILD WAS WRONGLY DIAGNOSED AND THE FAMILIES ARE BEING CRUSIFIED BY THE JUDICIAL SYSTEM. I TRIED POINTING OUT THAT OUR LITTLE GUY WOULD NOT HOLD HIS HEAD UP EVER HE TRIED BUT HAD NO CONTROL EVER. NO ONE WOULD HEAR WHAT I HAD TO SAY. OFFICIALS JUST TOTALLY IGNORED ME. OUR FAMILY AND OUR BABY IS SUFFERING. |
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| January 1, 2008 16:59:12 (GMT Time) |
| Name: | Linda George |
| Email: | Bellmawr,NJ USA |
| HomePage: | |
| Where are you from: | |
| Comments: | Sorry to hear about your daughter. We just found out that my husbands sister's grandson just born may have this illness. The parents are on their way to a hospital in Baltimore to get more test done. It sounds like they are going to have a lot of problems later. So sorry this happened to you. When hings settle down with them I'll give them your email address maybe talking to someone else about this illness may help. My prayers with you and your family. |
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| December 30, 2007 23:48:47 (GMT Time) |
| Name: | Jaime |
| Email: | Leesville, La |
| HomePage: | |
| Where are you from: | |
| Comments: | Home Health RN, researching this disease so that I can provide quaility care for a child with this disease. My heart goes out to all those who are affected by this disease. May God bless you all. |
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| December 19, 2007 16:33:55 (GMT Time) |
| Name: | tracey |
| Email: | scotland |
| HomePage: | |
| Where are you from: | |
| Comments: | i am very sorry for your loss, i have a son who has ga but the docs dont yet have a type for us they think he may be the only one with a new type he is 3 and doing very well although he is tube fed because of poor appetite he is just like any other 3 year old which i am greatfull for, the information on this web site has been a great help to me and many others thank you |
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| December 13, 2007 20:12:24 (GMT Time) |
| Name: | Pamel Schroeder |
| Email: | Lyons, Colorado |
| HomePage: | |
| Where are you from: | |
| Comments: | My granddaughter Lily Rodriguez has GA1 and is 4 yrs old. She lives in Ft. Collins Co. and has had GA1 since she was 1yr old. |
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| December 7, 2007 02:09:08 (GMT Time) |
| Name: | paulina |
| Email: | florida |
| HomePage: | |
| Where are you from: | |
| Comments: | im so so sorry i was doing a research about ga-l and i saw this story she seeme a nice little girl |
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| November 29, 2007 17:23:31 (GMT Time) |
| Name: | Vibha Gode |
| Email: | Georgia |
| HomePage: | |
| Where are you from: | |
| Comments: | I commend you on your courage .You are a source of knowledge and support to other parents braving the same storm with their beloveds. God bless you. I know a child with similar diagnosis.It saddens and angers me that new born screening in Georgia could have saved a lot of money and the parents grief instead of the cost of treatment that the state tried to save. |
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| November 26, 2007 23:22:00 (GMT Time) |
| Name: | Cristina |
| Email: | Maryland |
| HomePage: | |
| Where are you from: | |
| Comments: | My heart is literally breaking for you and your family. I am truly sorry for your loss and and I am deeply saddened. I am right now having my one month old daughter tested for GA1 and I am scard to death. I only hope I have half your strength to deal with whatever God has instored for my little angel. Thank you for sharing Allison and her story and may God Bless you and your family. |
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| November 5, 2007 21:17:01 (GMT Time) |
| Name: | Martelle Pamic |
| Email: | Australia-Victoria |
| HomePage: | |
| Where are you from: | |
| Comments: | No words can console...This was my sisters first site that really opened her eyes to hey baby son Zacs condition GA1. My nephew has been dignosed with GA1 from birth, like anyone, it's so hard to look into his/her eyes & wonder what lay ahead for him! He just came out of Royal childrens Hospital due to dietry problems & no other signs seem visible so far, we prey it stays that way! It has taken my sister 6 months to want to look into it in detail. the doctors are fantastic, but who & where can she get all information she so desparately needs to make his life & theirs more comprehensible? Please contact via my email address, & thank you for all informative contributions. |
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| October 22, 2007 01:14:51 (GMT Time) |
| Name: | |
| Email: | |
| HomePage: | |
| Where are you from: | |
| Comments: | |
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| September 28, 2007 01:21:30 (GMT Time) |
| Name: | christine brazauckas |
| Email: | nova scotia |
| HomePage: | |
| Where are you from: | |
| Comments: | my daughter has the same condition n is doing fairley well i'm sorry for what happen to ur daughter i got very stressed out n know my daughter is with there father but i still love her with all my heart n love to know more on her conditon i was in deinial 4 years ur daughter is beutiful my daughter is my little angel from above i miss my daughter to my e_mail is christine_bra@hotmail.com sorry 4 the lose of ur daughter |
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| September 27, 2007 23:24:39 (GMT Time) |
| Name: | christine brazauckas |
| Email: | nova scotia |
| HomePage: | |
| Where are you from: | |
| Comments: | my daughter has the same condition n is doing fairley well i'm sorry for what happen to ur daughter i got very stressed out n know my daughter is with there father but i still love her with all my heart n love to know more on her conditon i was in deinial 4 years ur daughter is beutiful my daughter is my little angel from above i miss my daughter to |
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| September 27, 2007 23:17:36 (GMT Time) |
| Name: | Valerie |
| Email: | Alabama |
| HomePage: | |
| Where are you from: | |
| Comments: | I know 1 child with this, and another child being tested for it. God bless your little angel!! |
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| September 27, 2007 17:29:49 (GMT Time) |
| Name: | molly |
| Email: | memphis TN |
| HomePage: | |
| Where are you from: | |
| Comments: | i just had my daughter on the 20 of august. she has been diagnosed with GA1. she is on the special formula, although right now i am using a can given to me by the nutritionist. i have to get it otherwise from the pharmacy. i have checked both with walgreens and walmart, neither carry it. the doc can give me no other options (theyre so smart) as to who might carry it. can you? i am terribly sorry for your loss. allison is in a better place now, running and playing like most other children get to. my only wish is that i will not have to endure what you did. but, if i do, i pray that my Addison is as happy your daughter seemed to be...handicap aside. please email me if you have information on where i can obtain the formula. ericandmolly@comcast.net |
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| September 17, 2007 21:40:29 (GMT Time) |
| Name: | Mia |
| Email: | Cincinnati |
| HomePage: | |
| Where are you from: | |
| Comments: | |
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| September 7, 2007 17:25:57 (GMT Time) |
| Name: | Jessie Winter |
| Email: | Wapekeka, Ontario CANADA |
| HomePage: | |
| Where are you from: | |
| Comments: | I have sevral nieces and nephews that have this disease. A majority of them have died from this disease. Are there any other sites I can go to for information. |
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| September 5, 2007 14:22:28 (GMT Time) |
| Name: | ALICE |
| Email: | INDIANA |
| HomePage: | |
| Where are you from: | |
| Comments: | THAT IS VERY SAD AND I TO HAV A BROTHER LIKE THAT AND HE IS RIGHT NOW IN THE HOSPITAL |
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| August 25, 2007 23:34:23 (GMT Time) |
| Name: | Emma Smith |
| Email: | Australia |
| HomePage: | |
| Where are you from: | |
| Comments: | My deepest sympathy for you loss, I have recently come in contact & made great friends with a young couple here in Aus who have 2 delightful boys under 2 with GAI. Thank you for sharing your experience :) |
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| August 15, 2007 11:49:20 (GMT Time) |
| Name: | Brenda L MIller |
| Email: | Quarryville Pa |
| HomePage: | |
| Where are you from: | |
| Comments: | not far from Dr Holmes Mortons office |
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| July 30, 2007 20:44:14 (GMT Time) |
| Name: | kaye elsner |
| Email: | bremen GA |
| HomePage: | |
| Where are you from: | |
| Comments: | the information you gave was very helpful i am going though almost the same thing with my one year old we are trying to figure out why he is having these problems i wish all the best with yor family and prays are with yall |
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| July 23, 2007 19:42:23 (GMT Time) |
| Name: | Michelle Robinson |
| Email: | Tucson, Arizona |
| HomePage: | |
| Where are you from: | |
| Comments: | Thank you. Your sight was encouraging and your daughter's life a message for us all; the depth of love. I too have a story. Our family has two disabled children. While their plight is not physcially severe, their mental challenges keep my husband and I seeking answers daily. I appreciate you sharing your angel. If only society could appreciate and see the blessing a disabled child really is. |
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| June 15, 2007 14:03:28 (GMT Time) |
| Name: | Nabil haykal |
| Email: | Egyptian |
| HomePage: | |
| Where are you from: | |
| Comments: | I have two kids Maram ,Ahamed 6&4 years old And They have Glutaric acidura type 1 I am very sad for your baby maram is in very bad case only she hear and see by her eyes Ahamed is good and take Ga2 formula from milupa and I hope he will be good if you have any advice for me please send direct E mail nabil_haykal@yahoo.com thanking you Nabil |
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| June 11, 2007 12:46:45 (GMT Time) |
| Name: | Teddy Bryan |
| Email: | Provo, Utah |
| HomePage: | |
| Where are you from: | |
| Comments: | Your daughter was a tattered angel. I am certain she is at the feet of our heavenly father today. Very loved and happy as in life. |
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| June 3, 2007 20:00:07 (GMT Time) |
| Name: | jennifer melchert |
| Email: | springdale pa |
| HomePage: | |
| Where are you from: | |
| Comments: | i have a child with ga1. his name is tyler and hes 4 years old. i am very sorry about your loss. she was a beutiful little girl. |
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| May 23, 2007 14:13:19 (GMT Time) |
| Name: | Tammy Milioto |
| Email: | LaPlace, Louisiana |
| HomePage: | |
| Where are you from: | |
| Comments: | Ilost a daughter, Caitlin to a heart defect. She stayed in PICU for 5 months. Came home for 2 days (basically to die) so I can sympathize with you. I did not however go through the things you did for years! I will pray for you and Allison. |
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| May 21, 2007 18:32:46 (GMT Time) |
| Name: | A.K. |
| Email: | US, Michigan |
| HomePage: | |
| Where are you from: | |
| Comments: | This is so sad. Allsion was strong through all of it though, you should be preoud of her |
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| May 21, 2007 15:12:35 (GMT Time) |
| Name: | Andrew |
| Email: | Santa Ynez, California |
| HomePage: | |
| Where are you from: | |
| Comments: | |
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| May 20, 2007 05:10:18 (GMT Time) |
| Name: | Missy REist |
| Email: | Colorado Springs, CO |
| HomePage: | |
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| Comments: | I am so sorry for your loss. I have a child of my own and cannot phathom losing him. |
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| May 20, 2007 03:22:17 (GMT Time) |
| Name: | Mrs. Post |
| Email: | NY |
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| Comments: | May God Bless you and your family. What a wonderful light in the world your little girl was and will always be. |
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| May 20, 2007 01:03:23 (GMT Time) |
| Name: | Kristy |
| Email: | Sacramento, CA |
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| Comments: | I'm sorry for the loss of your daughter. She looked like a child with a purely beautiful soul. I have never lost a child but just the thought of having to go through that kind of loss is more than I can deal with. I've worked with many children who had various disabilities and medical conditions. Even through all their pains, sufferings and challenges, they seemed to smile and enjoy life to the fullest of their abilities. This is the biggest lesson I have ever learned. |
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| May 19, 2007 18:09:37 (GMT Time) |
| Name: | Karen Land |
| Email: | DeSoto (Dallas), Texas |
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| Comments: | My granddaughter was diagnosed with GA1 due to her newborn screening tests shortly after her February 28, 2007 birth. Did Allison have the benefit of these tests? I could not find that information. I am so sorry for Allison's loss, devestation of that caliber is beyond my emotions or my ability to understand what is or has happened to our children with this rare disorder. I pray for a cure and am overwhelmed by Allison's story. |
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| May 14, 2007 17:39:05 (GMT Time) |
| Name: | donna |
| Email: | california |
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| Comments: | PICU RN caring for a child with this disease |
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| May 9, 2007 17:05:51 (GMT Time) |
| Name: | Kynra Lee |
| Email: | Teec Nos Pos, Arizona |
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| Comments: | I have a 17month old son with GA-1.if you check email, heres mine, kcurley02@yahoo.com |
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| April 27, 2007 21:11:49 (GMT Time) |
| Name: | Kynra Lee |
| Email: | Teec Nos Pos, Arizona |
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| Comments: | I have a 17month old son with GA-1. |
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| April 27, 2007 21:10:45 (GMT Time) |
| Name: | Kynra Lee |
| Email: | Teec Nos Pos, Arizona |
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| Comments: | I have a 17month old son with GA-1. |
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| April 27, 2007 21:00:41 (GMT Time) |
| Name: | dianne east |
| Email: | england kent |
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| Comments: | my son is 15 next week he has ga1 and his passed sounds almost identical to your daughters we cannot try a baclofen pump due to a spinal fusion and have to rely on a cocktail of drugs to ease the dystonia and pain. but he remains a bright and cheerful child who is very dearly loved |
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| April 27, 2007 09:50:59 (GMT Time) |
| Name: | Sharron Walker |
| Email: | Hawley Texas |
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| Comments: | My daughter Whitley had GA1 she died May 5 1992 at the age of three. She was a great blessing to our family. |
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| April 17, 2007 16:00:54 (GMT Time) |
| Name: | rebecca welty |
| Email: | LaJunta Colorads |
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| Comments: | i read your story and it seems that Allison was an outgoing little girl. I just found out that my step daughter Nevaeh has Glutaric Acidemia and i am scard of what is to come. |
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| April 4, 2007 16:24:25 (GMT Time) |
| Name: | Pooja Khungar |
| Email: | Loma Linda |
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| Comments: | sorry for your loss. Thanks for all of this amazing information and the beautiful picture of Allison. May God take care of your family. |
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| April 3, 2007 05:12:54 (GMT Time) |
| Name: | Rachel |
| Email: | Wyoming |
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| Comments: | I am an Occupational therapist and treat a boy here with this same disorder. Thank you for the information on your daughter as it has helped me treat my little boy much better. |
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| April 1, 2007 20:55:32 (GMT Time) |
| Name: | carol gallegos |
| Email: | colorado |
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| Comments: | my granddaughter nevaeh has just been diagnosed...she also suffers from deep vein thrombosis..please tell me what to expect from this disease i know nothing about or ever heard of before |
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| March 31, 2007 01:12:00 (GMT Time) |
| Name: | carol gallegos |
| Email: | colorado |
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| Comments: | my granddaughter nevaeh has just been diagnosed...she also suffers from deep vein thrombosis..please tell me what to expect from this disease i know nothing about or ever heard of before |
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| March 31, 2007 01:11:38 (GMT Time) |
| Name: | Jennifer |
| Email: | California |
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| March 17, 2007 04:44:20 (GMT Time) |
| Name: | Tracy |
| Email: | ohio |
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| Comments: | If you check this page any more I was wondering how she did with her eye gaze device we are trying to get one for my daughter they seem like they might be great for these children that can't control their limb movemnts. tjamison16@hotmial.com |
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| March 14, 2007 23:18:21 (GMT Time) |
| Name: | Tracy |
| Email: | Ohio |
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| Comments: | I am sorry to hear about Allison it is 2007 so it has been a little while but I am sure it is still too soon. my daughter is 5 and has ga1 she had her crisis when she was 2 1/2 she was left unable to do anything tjamison16@hotmail.com |
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| March 14, 2007 23:04:26 (GMT Time) |
| Name: | Brittany Dickey |
| Email: | Tennessee |
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| Comments: | I have a 7 year old brother named Michael Cordell Greene we call him Mikie the doctors are saying he might not make it much longer I love him to death I would do anything for him I just wanna know how do you cope when you loose your baby brother I cry all the time thinking about it. I t is much worse on my mom. she quit her job to be a stay at home mom for my brother. The reason I am so worried is because my dad died two years ago and she is still trying to cope with that so she is a single parent and I don't know how to help her deal with this. My brother started with a fever of 104 degrees F. I love my brother to death but I need to be there for my mom so I have one qeustion how do you cope? your web site gives me encouragement thank you for that! sincerly, Brittany Dickey |
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| March 6, 2007 18:02:02 (GMT Time) |
| Name: | Peggy Morton |
| Email: | Erie, Colorado |
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| Comments: | I am so sorry for your loss. I am here because my son who is almost 5 suffers from Epilepsy (grand mal) seizures. We were just notified we needed to rule out gluteric acidemia type 1. They (children's hospital) cannot get him in until end of June. I hope we have nothing to worry about, but he has been epileptic since the age of 6 months and yes ours too, came on quite suddenly and has only gotten worse. |
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| February 28, 2007 20:54:53 (GMT Time) |
| Name: | ALEKSANDRA |
| Email: | Ðîññèÿ |
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| Comments: | ïëîõî çíàþ àíãëèéñêèé,ìîæåò êòî ïîìîæåò? Ó íàñ äâîå äèòåé ñ GA 1.×òî äåëàòü? |
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| February 22, 2007 21:57:13 (GMT Time) |
| Name: | edgar lopez |
| Email: | california |
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| Comments: | flory my douther is on the last stage of ga1, i know exsactly what you when through ,only god knows why |
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| February 21, 2007 23:24:53 (GMT Time) |
| Name: | Mary Jane Goodale |
| Email: | goodalem{at}ballardspahr.com |
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| Comments: | Cont'd from prior email. If you would like to email me or my daughter (I can give it to her), my address is goodalem@ballardspahr.com. |
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| February 14, 2007 22:04:33 (GMT Time) |
| Name: | Mary Jane Goodale |
| Email: | goodalem{at}ballardspahr.com |
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| Comments: | Cont'd from prior email. Zelah throws up a lot too and caring for her needs is difficult for my daughter. She seems to experience daily the loss of her healthy baby who takes up allher time and energy. She's so angry and can't control it, to little Zelah's detriment (this pains me terribly). Zelah is my only grandchild (I have 1 daughter), and I love this little angel more than anyone. She can't roll over or sit or clap her hands, and her helplessness tears my heart up, yet her smile and bright eyes bring such joy to my heart. She's getting all kinds of therapy and she has the ability to sometimes grab things. Her brain seems to be in tact, yet she can't talk. She's only 2 so we pray and remain hopeful of her situation. When you say you're saddened by all the visitors of your website, I'll bet you are. If it was me, hearing of everyone's situation, I would cry for them all. If you would like to email me or my daughter (I can give it to her), my address is goodalem@ballardspa |
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| February 14, 2007 22:03:08 (GMT Time) |
| Name: | Mary Jane Goodale |
| Email: | Park City, Utah |
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| Comments: | What happened to Allison is terrible. It's so awful to lose a child. I can't possibly imagine. You try so so hard each and every day to make things go your way. I have a taste of the pain. My grandbaby, Zelah Farrell, just turned 2 in Jan. 2007. She has GA-1 too (days of seizures happened after she began walking at 13 months). I have movies of her walking though, which I'm grateful for. She has dystonia and spasticity and has a G-tube. My daughter uses her fingers to push food into her mouth, and sometimes she just won't eat. It makes my daughter crazy when she doesn't eat. She just has to gain weight. She's 22 pounds, which is a tad better. She throws up a lot too. Caring for Zelah's needs is extremely difficult for my daughter (she has no other children), and she seems to experience daily the loss of her healthy baby and the loss of her own life since Zelah takes up 100% of her time and energy. She's so angry and can't control her anger very well, to little Zelah's det |
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| February 14, 2007 21:56:09 (GMT Time) |