Hi everyone. I just wanted to let everybody know that Hannah is now on the care pages...i actually can't figure how to get back to it....?:-[ I also wanted...
http://www.oaanews.org/fundraising.htm Take 5 Minutes, Participate in the "5 for 5" Campaign and Help The Organic Acidemia Association Raise Money. Nutricia...
hello all, just wanted to let you know that laila now has a website! www.caringbridge.org/visit/lailaprather please visit her!! Dominique Mother of Laila 2...
Hi all! I was wondering if anyone has run into the same problems with finding adequate seating as I have. Shelton (20 months with GA), as some of you know - is...
Hi again! I wanted to add something to my last post I just sent. After I pushed send I realized that my ending may be interpreted incorrectly. I do not want it...
Wanda I didnt think you sounded selfish at all, you are just being a parent. That is a parents responsibility to fight for the best for their child. As a...
I am very anxious for some answers to this exact question. I agree, children with GA can't stay flat on their back all the time. It's so frustrating! I beg...
Hi Wanda, Ofcourse you are not being selfish, you don't come across that way at all! You sound like you want to help your little child which is what we all...
You are not selfish!! it is frustrating to watch your child lie there all day. Laila has a Lackey Activity chair and a Pacer walker (the pacer also works well...
Hi Fatma, Thanks for the friendly words. I sometimes get frustrated and second guess how others will take things. I have never heard of a "Lecky" chair. I...
Thank you Rebekka for understanding! That is exactly it! Things could be worse, and things could be better and as my ex's grandma used to say about life - "you...
Thank you for understanding! I started looking for the 2 items you mentioned Laila uses and can't find the Lackey chair anywhere. I think that must be the same...
Hi there! Thanks for understanding! I suppose I can't answer the question about the head...I thought it did but relooking at the picture maybe not. Shelton is...
Thanks for your reply, Wanda. My niece was diagnosed with GA1 at approximately 6-7 months old. She was born healthy and normal with the exception of a broken...
I spelled it wrong!!! how dumb is that!? but if you go to www.leckey.com and go to products then seating, Laila has the yellow one that is pictured. Hope...
Leyla's chair gets provided by the national health service so I didn't personally buy it but I know they are quite pricey costing around £1000 not sure what...
Hi again Wanda, The Leckey chair can have a number of very different head rests to suit the needs of the individual child. (Normally the rep and OT decide...
Hello again, The velcro cap is called a "Heads Up" It doesn't come with a chair but can be used with any that have a high back or headrest (it says on the...
Hi, everyone! My name is Lydia Kang and I have a beautiful 3 year old daughter with GA-I. We live in Vancouver, BC, Canada and this is her story. Even though,...
Hi Lydia! What a beautiful story! Thank you for sharing! Although I needed several tissues to read it in it's entirety, it was sure nice to hear Julia's...
Hi, again, this is Julia's mom. I finally had some time to sit down and read through other messages posted. So much useful information! I wish I came here much...
Lydia, I'm so glad you are now comfortable in posting. Welcome to the group!:-] Your'e Julia is so amazing. I'm so glad that she has such tenacity. Can you, or...
Hello, My Jayden is almost 6 years old and has severe dystonia. The doctors have described dystonia to me as being "abnormal muscle tone". One minute his...
hi! my laila is 2 1/2 and has ga1. she is on Artane, clonazepam, carnitor and gets botox shots every 3 months. the botox works well for her becasue she is...
Hi My name is Debbie and I am the lucky Mom to Charlene, who will be 14 next month. Char was diagnosed at 8.5 mths. She had a metabolic crisis and in such 3...
Hello to all I was wondering if there are any families in TN? We are thinking about relocating there and I am in need of resources! -- Debbie Mom to Charlene...
Welcome Lydia: Thank you for sharing your story about Julia - she is truly a little fighter!!! I notice you live in Vancouver, BC - we live in Victoria, BC...
I have briefly been told that Deep Brain Stimulation may be an option for the future to remove the dystonia Leyla suffers from which may give her some...
Fatma, Dr. Morton talk to us about this technique, so mabey he would have some insight fior you. Wanda, Hannah's Mommie Fatma McCauley <f.mccauley@...>...
Hi, we live in Lynchburg, TN. In the middle close to the Alabama state line. Jennifer Cody, 8.5 months, GA-1 thskiss84@... wrote: Hello to all I was...
