Hello everyone and thank you for visiting our site! My wife Stephanie and I have decided to share our son’s story here in order to inform and update everyone all in one place. I will start with a little bit of our history in case you are new to our/Chris’ story.
Our oldest son Christopher Lake Michaelson, was born Sept. 19th 2007,and is currently 8 years old. Chris has currently lost almost all of his vision and has been legally blind for almost two years. We started having concerns about his vision around the age of 6, not long after he started Kindergarten. We took Chris to the optometrist and they suggested glasses which he happily started wearing. After only a couple months his glasses seemed to not be working, so we again went back to the optometrist to find out why. The optometrist had a hard time finding answers for Chris’ vision loss so we decided to pursue a Nero-Ophthalmologist at the advise of our pediatrician. Over the course of a few months we saw multiple specialists and in May of 2014 were finally told that our son had a form of cone-rod dystrophy which would lead to blindness. Over the summer break between Kindergarten and 1st grade, he lost much more of his functional vision and went from being able to see bold print to needing to learn braille in just a few short months. Chris started 1st grade with the help of an amazing Teacher of the Visually Impaired (TVI) but, we started to notice some other issues affecting Chris’ learning ability. He seemed to be forgetting things that he had already learned and started having a difficult time remembering new information. He also started to have behavioral changes at home and wasn’t liking school anymore. Stephanie and I went to many meetings with the school and medical specialists and fought to get Chris the services and support that we felt he needed. The school and specialists shrugged off our concerns and told us things like: “He doesn’t seem to have behavior issues at school, so we’re not sure what’s going on at home” and “Well all kids his age have a hard time focusing and remembering things” The school and medical specialists were not listening to us or his TVI and we decided it was time for a change. It was then that we made our decision to move 1,700 miles from Tucson, Arizona to Bellingham, Washington. It was one of the hardest decisions we have ever made to leave our families back in Arizona but, we did our research and felt like it was the best thing we could do for Chris and our family.
Chris started 2nd grade and our youngest son Nick started Kindergarten here in Bellingham in Sept. 2015. Immediately my wife and I noticed that Chris had lost a lot of what he learned the previous school year. He went from being able to braille/read the entire alphabet including 3-4 letter words to only knowing a few letters of the alphabet and his name . We knew he would forget some of the skills he had perfected from the previous year but, we had no idea that it would be so much. Again we sat through IEP meetings with the school and stated our concerns with his focus and memory struggles. We were desperately trying to identify the “missing piece” that was causing Chris to loose these abilities. We also voiced our concerns with Chris’ pediatrician who decided to refer us directly to Seattle Children’s Hospital Ophthalmology department. Our ophthalmologist (Dr. Cabrera) was so caring and took the time to not only listen to our concerns but also offered some direction as to what could be happening with Chris. She referred Chris for some testing including: MRI, bloodwork, and ERG, as well as got us an immediate appointment with Dr. Merritt in the Biochemical Genetics department at Seattle Children’s Hospital.
This leads to the reason for creating this site for us to share with all of you. We have now received the answers that we have been searching for for over two years …
Christopher has been diagnosed with an extremely rare Neurodegenerative disorder known as Juvenile Batten Disease. Batten disease, also know as Neuronal Ceroid Lipofuscinosis or NCL, is an autosomal recessive, inherited genetic disorder in which both parents are carriers for the disease but do not show symptoms. In very basic terms, the cells in Chris’ body can not process certain materials they need to function correctly. This leads to a “build up” of material in the cells which causes the cells to die. Symptoms typically start with vision loss and over time progress to seizures, dementia, loss of cognitive functioning, loss of motor control, loss of speech, loss of ability to eat/drink and is always fatal.
There are four main forms of Battens disease (infantile, late-infantile, juvenile and adult onset). Chris has the juvenile form also know as CLN3 and the life expectancy for kids with his form is anywhere from 15 to mid 20’s. However, there are many factors that play into disease progression and it’s so rare that there’s not a lot of information on what could possibly help extend life expectancy or improve quality of life. We have been informed that our only option is to treat his symptoms as they come, as there are currently no approved treatments or cures for this horrible disease. We are trying our best to be proactive and stay positive and hopeful that one day a cure will be available for our special little boy. If you would like to know more about Batten Disease you can go to www.BDSRA.org.
As you can probably imagine, we are completely devastated. No parent should ever have to watch their child slowly have everything that makes them who they are stripped away right in front of their eyes. It is so hard to think that just a few years ago Chris was a typical little boy developing so well and hitting all his milestones and now we have to watch that all get taken from him little by little. He is the most amazing and loving child and has not let his disability keep him from doing anything he wants to do. He is such a caring person and has an incredible sensitivity to everyone around him. He is always the first one to offer his help and loves to take care of us when we don’t feel well. Chris loves animals and they seem to sense the loving, caring, huge heart that he has. He has touched every one that has worked with him in a very special way and he lights up our life with his amazing smile and contagious laugh.
It is difficult to believe that the life we envisioned for him and our family is going to change so much. We are doing our best to be strong for Chris and for each other so please understand and respect our need for privacy in this exceptionally difficult time for our family. Stephanie and I will be creating a fund for people to donate to help with traveling, medical, and financial hardship. You can also help with donations by folowing the PayPal.me/Crusade4Chris link on the side bar above. If you are viewing from your phone it will be below this post. We will be posting more updates in the future on this page as well as our Facebook page so please share with everyone you know and click on the link to the right to follow our journey. If you would like to contact us or help with raising awareness/fundraising in the future please feel free to use Facebook, email or this page. Thank you so much for your love and support!
Jason, Stephanie, Chris, and Nick