Hi everyone, how was the social. Any new developments on GA-1. I pray that they can someday soon find a cure ,or a medication to prevent a crisis in young...
Hi there! I didnt go to the social but wanted to say hi to you! Can't believe it has been another year. Shelton is almost 4 also (the 17th) and it is a miracle...
Hi Wanda, we live in N.C. and because the kids disability can lead to death, they recieve all the benifits through the government that is offered. When they...
Hi , does anyone know of seating that would be comfortable for the kids that are immobile. My grandson Kobe is about 31 pounds now ,I need to find him some...
Hi Wanda, I know for Sarah (almost 26 lbs) her wheelchair is the best position for her, but she doesn't want to sit in it all the time (nor do I want her to)....
Destiny has the wheelchair but she also has a pixie chair, special bean bag chair, a special tomato chair, and then sometimes she is just proped on the chouch...
I am asking for help from web designers to assist us in developing the IOGA website more. We want to include pics from the social as well as the GA Golf Event ...
Hi, Cay, My name is Lydia Kang and my daughter Julia has GA-1. We didn't get a chance to meet you in person but we've received so much support from yahoo group...
Well Lydia you do wonderful work! Plus you being a parent of a child with GA makes you exceptional for the task at hand. Now my question is can IOGA afford ...
Hi moms , thank you ever so much .The special tomato chair is just what Kobe needs, his therapist agrees. So I guess he will be getting one. Thank you again....
Hello All! I always feel a little guilty for posting on here with questions when I've not been on very much at all - including answering questions. So, please...
Destiny had hip surgery in July they bent her bone back into her hip put some bone from her thigh in with it and put a rod in her thigh they will take the rod...
Tracy, I am glad to hear Destiny did alright with it. Are you avoiding weight bearing due to pain, or leg atrophy, or all of it? Thank you so much for...
Hi everyone . my name is Nikki. I have a 9 month old baby that was diagnosed at 2 weeks with GA1 due to NBS. He wa s a perfectly healthy baby up until 6 months...
Hi, Welcome to the group. I'm an aunt to a GA1 child, diagnosed after crisis at 14 months of age. She had regressed quite a bit, too, after her crisis she...
Herleg won't completley straighten out and of course it is now shorter (the bad thing is it was already shorter to begin with lol) she no longer seems to have...
Hi, my name is Larysa, we have our little daughter Elizabeth, she has GA-1. She is three years old now. We found out that she has GA-1 just last year in...
Welcome to the group. I have two grandchildren with GA-1 .I too think of this disorder as scary. My grandaughter ,Aliyah was diagnosed at N.B.S. thank God our...
Hey all, I have a 7 month old boy who was diagnosed with GA-1 with NBS - he is healthy and is on a low protein diet. I have recently read here about several...
My daughter Reese has ga1. She is 2. She was diagnosed at birth. I just wanted to say that because ga1 is so rare and there is little known about any...
Hi, My daughter, Sarah Grace, also diagnosed through NBS, but had a crisis at 5 months old. She is now a happy 2 year old but has been diagnosed with athatoid...
Coco, Thank you for that! I agree. It is too easy to generalize when trying to inform others, and then to also stray from generalizing because you don't...
Ivette, Hi welcome to our group. I also have a child with GA1 diagnosed at birth. She is now a normal, healthy 2.5 year old, we haven't needed to do any PT...
Rebecca, Thank you for replying. I am so happy to hear about Eva. I wish her continued good health. Yes, it is difficult to accept that we don't have the...
Hi Ivette, we count protein, Eva can have all vegetables and fruit but we have to weigh and count potatos, peas and corn, all others are free foods for her...
Hi There! I wanted to let you all know a few opportunities for us to connect, alongside this wonderful yahoo group. The Baio's will be starting a forum on...
I just rec’d a link for a new Parent Forum for parents to discuss their NBS experience with other parents and some healthcare professionals. I know some...
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