Welcome! I hope that this board will be a good resource to all those who are looking for answers about Glutaric Acidemia and caring for those with GA1. Please...
Was so happy to see this organization. My grandson was diagnosed with Glutaric acidemia type 2 when he was 3 years old but only after extensive testing. We had...
hi. my name is sammi. i have twin girls who will be three in september. the oldest of the two has been having medical problems since she was born. when she was...
My daughter has mito, bone marrow failure and 2 yrs. ago was worked up for GA. After alot of testing they say she has GAIII which is benign. We put her on high...
My son was born on September 20, 2003. He was born with a heart defect called transposition of the great vessels. He had surgery when he was 10 days old....
Hello All, I just joined the GA1 group as of yesterday, I am so glad to hear that there is finally somewhere where I can gather information about this...
This story sounds hauntingly familiar, and unfortunately, it seems to be a classic way for GA1 to present. My son Peter will be 3 on May 6th and will be...
I am so glad to hear that your son was diagnosed at birth, you have been given such a great chance for him to have a healthy life! Check out the web link on...
Melissa, That's great that Peter is able to roll over from one side to the next and to walk somewhat! My son Jayden can't do any of that, but we have been...
Hello Linda, My son is 3 1/2 years old and has GA1. I would be more than happy to speak with you about him if you want to, please feel free to email me with...
Hello I am very pleased that I found this group, it seems to be the right place to talk about our special children. I am from Denmark, a very little country...
15
Kev And Claire
KevAndClaire@...
Apr 12, 2004 9:32 pm
Hello everyone, It is great to see this group up and running. Our son Joseph was born in February 2001. Everything appeared to be normal up until his 1st...
Marlene, thanks for sharing your story. It sounds quite similar to my neice's story. She had her crisis at 16 months of age, and when we were finally given a...
Kev & Claire, We were very fortunate to have had our little Ayden tested at birth as you did your Daniel. Do they have Daniel on any medications as of this...
Marshella, I found hope and faith upon reading your story, as I think Thea is the first GA1 child that I have heard who walks! Congratulations! I hope we can...
19
Kev And Claire
KevAndClaire@...
Apr 14, 2004 6:06 pm
Vicki, They have put Daniel just on Carnatine and told us to keep his meat intake down To three times a week to reduce the amount of protein his body has to ...
Hi There, It has been difficult to tell my story to those who don't not understand GA1 and also, difficult to face that my child has recently been diagnosed...
Hello Sarah, and welcome to our community. Thanks for sharing your story. It is very sad that anyone has to celebrate their child's first birthday in a...
Please keep us updated on lilly's progress. It is hard to go through something like this. Just letting you know that we are all out here for you. If you need...
Sarah, Oh my gosh do you ever sound like me! I was there 3 years ago, and still am there. You cannot help but feel angry at the world for what has happened...
Sarah, There are so many things you say in your posting that make sense to all of us who find ourselves in this position, especially what you say regarding ...
I am a teen parent of twin boys with GA-1.It is very lonley on the west coast. i have not really found anyone close to me to talk to about my sons.They are 17...
I am a teen parent of twin boys with GA-1.It is very lonley on the west coast. i have not really found anyone close to me to talk to about my sons.They are 17...
Hi Erin, My name is Lisa, and my son, Michael, is 3. he was diagnosed 2 years ago at the age of 14 months after he went comatose. I am glad your children...
Hi Erin -- feel free to check out the Organic Acidemia Association website at www.oaanews.org We are a parent support group for a wide variety of organic...
This board has been very informative and a little scary. My son Lucas was born on 4-7-04 and after 3 PKU tests and 1 blood/urine test he is showing high...
Hi Mike - have you had a chance to check out the FOD Support Network (Fatty Oxidation Disorders)? GA2 and SCAD are considered an FOD and their website have...
Hello. My name is Cindy hill and my son was diagnosed at birth also. We were very worried when we started to get more and more information on GA1. (that is...
Cindy, Thank you so much for your response. My name is Mike Morici and my wife's name is Joanne. We live in St. Charles, IL a suburb of Chicago. I am going...
