Thursday, February 10, 2011



Bryce was born as the fourth boy in our family. Although he has always been special in his own way, he developed normally just as all the others had. He hit all of his milestones right on time. He began smiling, rolling over, sitting, crawling, talking, standing, and at 11 months of age he took his first steps.

However, in June of 2008, at the age of 17 months that all began to change. Bryce never really had taken off walking and I began to notice that when he would pull himself up on things he was no longer able to get back down. I took him into the pediatrician who looked him over, checked his reflexes and said that everything looked fine, but to bring him back in if I noticed anything new. Well, less than one month later things really began to go downhill. First he lost the ability to sit. I took him back into the pediatrician who had us see a neurologist right away and that's when this journey began. Over the next few months Bryce endured many tests including multiple MRI's, Ct Scans, EMG, EEG, spinal tap, urine tests, and has had more blood drawn than most people do in a lifetime. Although everything was coming back normal, Bryce continued to lose more and more of his abilities. His team of Neurologists at PCH were stumped by his symptoms. They had no idea what was going on.

By November 2008 he could no longer walk, talk, sit, crawl, or roll over by himself. He was also having trouble breathing and swallowing. It was a very scary time! He was hospitalized and had more tests done, including another MRI of his head and spine. This time there were some abnormalities with the white matter, abnormalities that our current neurologist has referred to as, "abnormal, but not in the normal way." The radiologist later admitted that these abnormalities could also be seen on the first MRI as well...just to a smaller degree.

Since that time, we have seen 6 neurologists along with many other doctors. In January 2009, one of the new Neurologists we were seeing, Dr. Narayanan, thought that it may be some form of Leukodystrophy. Finally, in June of 2009 Bryce was officially diagnosed by Dr. Narayanan and Dr. Aleck (geneticist) with Undiagnosed/unspecified Leukodystrophy, meaning that the doctors believe that he has some form of Leukodystrophy, they just don't know which type. Although a devastating diagnosis, at least we now have some direction to go. Bryce continues to regress and has become weaker since that time, although luckily at a much slower rate than in the beginning. He is now exclusively fed by g-tube and struggles with many apnea episodes throughout the day. We continue to search and pray daily for answers to Bryce's mystery. (go to for more information on leukodystrophies)

Wednesday, February 9, 2011



Well, it has been confirmed by Dr. Narayanan, Bryce's little sister will be joining him in this mystery disease. We saw the neurologist yesterday and sure enough, Annalise seems to have the same thing Bryce does. I just wish we knew what IT was! Some specialists still believe it is some unknown type of Leukodystrophy while others believe it is some totally different type of genetic recessive disorder. We are working with Dr. Narayanan to get some genome sequencing that will hopefully help us find out what is causing the problem. We have been accepted into a research study which will hopefully help us find some answers. However, it may take years to have any. So, we are also looking into the option of doing the testing on our own. Dr. N said that it will cost about $10,000 to get it started. He is going to look into the how and we will be looking into doing some fund raising activities to earn the necessary money. Luckily we already have a couple of ideas and some people who are already on board to help us out! There are so many good people in this world! We are so grateful for all of you!

It is so hard to watch our kids going through this and a little overwhelming, OK, a lot overwhelming as I think of what is ahead of us. I already feel so tired and stretched to my limits, but I guess the Lord knows something I don't! I am sure not looking forward to watching what my little girl will have to endure in the coming months though. It makes my heart hurt!