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My Son Reagan was diagnosed with GA-1 in 2005 when he was 9 months old. Since that time he has been on a very strict diet to control his protein intake, and takes medication as well. Reagan has always been a happy and loving boy, who is always thinking about others before himself.

The days when he was a baby were really challenging, simply because he hated the limited variety of foods we had to give him. We had plenty of nights staying up until 11:00 trying to get him to eat, when he didn't want to, always worried that he wouldn't have enough food in order to keep his health up. We were always afraid of his health back then. Now after many years of working with him, and therapists and doctors, Reagan has grown into a great little boy, who has the heart of a lion. He gets a little impatient at times when he can't do things that other kids can, but I think that drives him to push harder. His speech is pretty much normal with a few hic-ups, and his mobility much better than when he was younger. We were truly blessed in the Doctor at Children's Hospital in Denver who had the for-sight to have him checked when we first had issues, and that he never had a seizure. There is another site out there about a girl names "Lily" and reading her story, my heart goes! out to that family. It could be that what happened to Lily was what made the doctors do a thorough check on Reagan. Reagan lives with his Mom and the other three kids Tyler, Connor and Madison in Gloucester Virginia and I am deployed with the Army. We hope and pray that Reagan gets better with every day and that he will have the opportunity to lead a fulfilling life.

My son Luke was diagnosed with GA1 in November 08 aged 19 months. We had taken Luke along to our GP on a Friday afternoon, the doctor advised us that he had a viral infection and although she could never have detected GA1 Luke was rushed to Yorkhill hospital that evening when his body went limp and his eyes began to roll backwards. Once in hospital the doctors were baffled, Luke was placed in intensive care and we feared he wouldn't pull through. Throughout the weekend we were informed that the doctors hoped he had meningitis but feared that it could also be a metabolic disorder called GA1 and on the following Wednesday their fears were confirmed. We were given what information the doctors had and spoke to a dietician. We were also given the results of Lukes scan which showed that as a result of the metabolic crisis/coma that he had suffered his brain had been left severly damaged.There was a hole in his brain at the area which controls movement which ment Luke would be left completely disabled, he would have none or few movements skills/control and would also have distonia which is involuntary movements generally found in stroke victims. Luke did not have a learning disability but still his future looked bleak, we would have to teach him intelectually with technology. We spent the next 6-8 weeks in hospital learning to feed and medicate Luke, it was so difficult watching his little face fill with frustration wondering why he had woke up unable to walk, talk, eat or even use his eye control. We returned home in time for Christmas but Luke took an infection and we were back in hospital over New Year. Due to constant sickness the doctors decided to do a fundiplication op which tightens the stomach, they also put in a gastrostomy tube which made things so much easier. Since Luke was diagnosed things have gotten much better than we could ever have imagined, through sheer determination he is now crawling, trying to pull himself up and sits on the floor playing for great lengths of time unaided. He also communicates well using Makaton signing and has recently started attending main stream nursery school Luke will be 3 years old on march 18/10 and is a happy loving little boy. He still refuses to eat anything orally and due to everyday childhood illnesses can be hospitalised often but the progress he has made in such a short time helps us realise anything is possible.

Edit

After a perfect pregnancy and an exciting arrival of our first baby my husband & I welcomed home our perfect baby boy to soon find out that he was diagnosed with GA1 at his newborn screening. The initial call was the second day we were home from the hospital and it was traumatizing to say the least. "Your son was diagnosed with Glutaric Aciduria Type I" the doctor told us. We had no clue what that was and had never heard of it in our lives! We were sleep deprived and as fist time parents were desperately trying to figure out what we were supposed to do with this little person that was in our home. Then she tells us "You need to get to Children's Hospital immediately or he could die!" It was in a panic tone. We, of course, FREAKED out & rushed to the hospital only to find out we would be there for nearly 6 hours. The initial shock took months to wear off. As we gathered more information it became less of an issue and more something we could fairly easily manage. We are still finding out that the best advice isn't always given to us by our doctors as they don't understand what it's like to be the parent / patient. We are continually looking for more information, opinions and networking. I am hoping this site will do just that. My husband & I have come to realize that this is in no way detrimental to our Son's existence. It is the opposite. This disorder has become quite the blessing. I truly believe that he is the healthiest kid we could ever have had. With the Dietitians & Doctors monitoring everything put into his body there is no way possible for him to miss a single nutrient or phase that he should have. It has pushed our family to eat healthier making better choices about our diets. I believe that this is a positive live style despite the struggles that we know are coming. We also believe that God has given this child to the perfect family - he knew we could handle it with a big smile & a "Thanks". Our Son is now 10 months old and is very healthy. He is in the 93% for Height & Weight and eats like a champ! I'm sure you know that this is very strange for GA babies. He is learning how to walk and has raised no red flags with his several visits to the neurologist. He is doing great!

Thanks

Paypal is now working for us again.

Features of the chat

Now users can create more then one chat room. Now JKMSPACE  is the only social website that supports user created chat rooms

The Chat Software is now powered by Skysa rather than Tinychat. Plus JKMSPACE has been given the chance to use Skysa's new integrated video chat (which is currently in beta) before it is publicly released to Skysa users next month.

Friend to friend chat

Guest can make room

Video chat

We did changes to the site this morning We set everything that you a users and advertisers had to pay for at one price $50.00/month and did away with free ads.  We rolled a new feature like on ebay where you can make a store and sell products

To make a store go to groups and make a new group then make like a store there then tell about your products in the group topic this also cost $50.00/month

Another change is that we have change the fun tab to arcade tab and we have put the maker of the apps instead of JKMSPACEAPPs.