HOW THE MYSTERY BEGAN In January 2007, our fourth child, Bryce was born. He was a healthy newborn and although he has always been special in his own way, he began developing normally just as his brothers 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, those steps would be his last unassisted ones and in June of 2008, at 17 months of age, everything 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.
In July Bryce began rapidly losing his skills and by November, he was hospitalized, no longer able to sit, crawl, walk, talk, roll over by himself, and having difficulty breathing and swallowing. During those four terrifying months, Bryce endured multiple MRI's, Ct Scans, EMG, EEG, spinal tap, urine tests, and has had more blood drawn than most people do in a lifetime. As he regressed, the tests continued to come back normal, leaving the team of Neurologists at Phoenix Children's Hospital completely stumped! They had no idea what was going on with our boy.
We went searching for someone who could help us find out what was happening to our son. Since that time, we have seen 6 neurologists along with many other doctors. Finally in June of 2009, after finding a slight abnormality in the MRIs, (which the radiologist later admitted could also be seen on the first MRI as well...just to a smaller degree) our current neurologist diagnosed Bryce with Unspecified Leukodystrophy, meaning that the doctors believed he had some form of Leukodystrophy, but were unsure of the type.
Although at a much slower rate, Bryce continues to regress. He has lost the ability to suck and has trouble swallowing. He is currently fed completely by G-tube. He also suffers with breathing issues. He needs 24 hour care and assistance with even the most basic tasks. We continue to search and pray for answers.
A NEW TWIST TO THE MYSTERY
In May 2009, Bryce's little sister, Annalise was born. A healthy baby girl! She too began to develop normally, learning to talk, walk, and beginning to run. We were devastated when at the age of 17 months, we began to see signs of regression and on December 23, 2010, she too was diagnosed with Unspecified Leukodystrophy. Although, thankfully her regression has been slower than bryce's, she has lost the ability to run, or walk independently. One year later, she is no longer able to stand, sit, crawl, or roll over without help. She suffers from pain due to spasticity and inflammation throughout her body. She is losing the ability to feed herself and struggles to get in enough calories to maintain a healthy body weight.
We have continued to work with specialists from around the world trying to find out what is robbing our children of their lives. We have been accepted into a research study which will hopefully help us find some answers. However, it may take years to have any. Through genetic testing, we have found that they may have a very rare form of Leukodystrophy called Aicardi-Goutieres Syndrome (AGS5). However the results from the tests are a bit inconslusive...so the search continues!
It is so hard to watch our kids going through this. It makes my heart hurt! But, although everyday is a struggle for these children, they continue to delight everyone around them. Bryce continues to be one of the happiest children I know. Cognitively, they are right on track. Their desires are just like those of any other children their age! Bryce loves trains, balls, and crashing toy cars. He loves basketball and soccer. He wants to wrestle with his brothers, play with toys, ride a bike, or just run around with the other kids, but his little body limits what he is able to do. Annalise remains determined to do as much as possible on her own (as any 3 year old would). She points out letters, shapes, and colors everywhere we go. She loves to sing her ABC's, count, and make her brothers laugh.
Bryce and Annalise both bring so much joy and happiness into our home. We are so thankful that they are a part of our family. We know that they are very special spirits of our Heavenly Father and we cherish each day that he allows them to be here with us!
https://www.facebook.com/groups/401948456587333/
http://www.youtube.com/watch?v=gH_EhYMn4ds
We have continued to work with specialists from around the world trying to find out what is robbing our children of their lives. We have been accepted into a research study which will hopefully help us find some answers. However, it may take years to have any. Through genetic testing, we have found that they may have a very rare form of Leukodystrophy called Aicardi-Goutieres Syndrome (AGS5). However the results from the tests are a bit inconslusive...so the search continues!
It is so hard to watch our kids going through this. It makes my heart hurt! But, although everyday is a struggle for these children, they continue to delight everyone around them. Bryce continues to be one of the happiest children I know. Cognitively, they are right on track. Their desires are just like those of any other children their age! Bryce loves trains, balls, and crashing toy cars. He loves basketball and soccer. He wants to wrestle with his brothers, play with toys, ride a bike, or just run around with the other kids, but his little body limits what he is able to do. Annalise remains determined to do as much as possible on her own (as any 3 year old would). She points out letters, shapes, and colors everywhere we go. She loves to sing her ABC's, count, and make her brothers laugh.
Bryce and Annalise both bring so much joy and happiness into our home. We are so thankful that they are a part of our family. We know that they are very special spirits of our Heavenly Father and we cherish each day that he allows them to be here with us!
https://www.facebook.com/groups/401948456587333/
http://www.youtube.com/watch?v=gH_EhYMn4ds
