My name is Amber Owens. I live in a little town in Missouri called Sturgeon. My son Parker was born on October 16th, 2004. Parker has been in and out of the hospital since his birth. When Parker was born it was very unusual. My water broke and I was 34 weeks along in the pregnancy. No complications during pregnancy nor at the birth. Parker was breach and he had to be taken by c-section. When Parker was pulled from my body he was what they called hypotonic. He didnt cry neither which was a worry to me but I was told that it could happen by the doctor before we even went into the operation room. But when I saw Parker for the first time I was just amazed that he came from me and my husband and he was so beautiful. He did seem to be floppy and weak but I didnt care. Then about a week after his birth Parker started to have seizures. We were then transferred to another area hospital to get more testing. There is when they first thought Parker had Mytonic dystrophy. The tests finally came back negative in all areas of that issue which was a little relief for us. But at this new hospital we tried to get Parker to eat and get ready to go home. Well Parker had a seizure the day before we went home and turned blue. I went crazy because I could do nothing to help him. All I knew was that he wasnt breathing and I was scared. Parker was given medicines which pretty much knocked him out. They were sure Parker was having seizures. So once the doctors thought Parker was stable with his seizures we went home. We had an apnea monitor and everything. Parker stayed home for 6 days and we went right back to the hospital because he decided to have mulitple seizures on thanksgiving 2004. We spent another few days in the hospital trying to get his medicine correct and then went home again. I had not started working yet but was scheduled to start on Dec 11th. I went to work and made my husband stay home that day to take care of Parker. Well he had to call the ambulance because Parker had another seizure that caused him to turn blue again. At the hospital we were admitted that day Dec 11 2004. It wasnt to long before the doctors thought Parker was fine and we tried to go home again, but Parker decided he didnt want to go and ended up having a seizure in his car seat as we were walking out of his hospital room.

We still had no idea what was going on with our baby just that he was having seizures and was hypotonic. Tests were being done but still nothing came out. Parker has had 2 blood transfusions since they take more blood than he can make. So since Dec 11th, 2004 Parker has been in the hospital. During this stay he had them put a G-tube, and a central line in Parker so that feeds and giving blood would be easier. At that time he had a muscle and skin byopsy and also a spinal fluid tap. The muscle byopsy came back with a weakness nothing to include cerebal palsy or anything like that. The skin is being used to find which chromosomes are affected in Parker for when future children come along to see if they have this problem. And the spinal fluid came back fine. I got the news that Parker is being diagnosed with Zellweger Syndrome. The long chain fatty acid test was clotted during the travel to the lab, so another test is being ran just to make sure that it is still correct. So we are 100% sure that Parker has this. He has calcium deposits on his knee caps, seizures (barely controlable), poor muscle tone, trouble swallowing. So most of the signs are pointing to Parker having this problem. I just need to know how every is dealing with their child having this and how do you get over it. I dont know what I am going to do when Parker does leave us. He is just so cute and I just dont see how God can do this to a person. Please I am looking for some kind of support from anyone. Please... this is to hard to go through when you have never had to deal with this before.

Thanks for reading my message and thank you now for any inputs you give me.

Amber Owens

I also would like you to include.... that the latest information we have is that Parker has a milder form of Zellweger's they are testing right now inorder to find out which one it is. He is improving with great stride. Or as well as these children can. Parker is getting better at head control and we are hoping for him to start holding his head in a few more months. We have also started him on his DHA and are waiting for improvements if any do occur. As far as that we are one big happy family just taking it one day at a time with Parker. We are enjoying him daily and want everyone to enjoy him. He is a great gift and now I have realized that God gave him to Bill and I for a great reason.... to grow stronger together... as a family. Thanks guys for everything you have done and we appreciate it... greatly.

Amber Bill and Parker