A very wise friend of mine recently told me that out of his darkest times in his life came his biggest triumphs. I am writing to tell you about our own journey of this last year and a half. Some of the people who know the hard road we have been on are thinking right now that I have completely lost my mind by calling this story a gift. Perhaps. Just keep reading, it gets better. I promise.
In the spring of 2010 we were just a normal family, looking forward to the end of school and summer vacation. My son, Nick, would be graduating from middle school and moving on to high school. Middle school had not been such a great experience for Nick but he was looking forward to getting a fresh start at Monarch High School. Our summer plans included our annual trip to Michigan to play in the beautiful lakes and to see many of my high school classmates that I had reconnected with on Facebook. We were having our 30 year high school reunion and I was looking forward to it believe it or not. I had everything planned, hotels booked months in advance and friends I planned on visiting. As the saying goes, if you want to make God laugh, tell him your plans. Clearly God had other plans for us that summer.
In the song, “Closer to Love” by Matt Kearney there is a line that states “We are all one phone call from our knees.” No offense to Matt, but I always hated that line because sadly, I know that is true. I never wanted to get that call. Unfortunately we did on July 26, 2010. Children’s Hospital in Denver called to tell us that our 14 year old son, Nick, had been diagnosed with a very rare autoimmune disorder that affects the myelin sheath covering the optic nerve and currently there is no cure. Needless to say our world was turned upside down. (I have posted our story on http://www.caringbridge.org/visit/nickplutt). How will this affect Nick? What did this mean to our family? Sadly because this disease is so rare (his chance of getting this was one in 5 million), there was not much known about it and very limited answers were given to us. We would have to find out the answers for ourselves.
We found that the University of California in San Francisco was one of two pediatric centers that actually treat this disease. We immediately made an appointment to visit them to get a second opinion, learn all we could about what was going on with Nick and what our treatment options were. We did get some answers although it was like pulling teeth. We certainly were not given any hope. We would have to put Nick on immune suppressants to keep his immune system under control. Unfortunately Nick had a second attack before we could get him on medication. As a result, he has lost the sight in his left eye. As a family, we rounded up the wagons and hunkered down. We just couldn’t talk about it. It was just too painful. We had many caring friends with offers of help. We didn’t even know what to ask for. We were just devastated.
Over the next few months, we started to hear more and more about people and especially kids coming down with an autoimmune disease. Dan and I spent months and months researching autoimmune disease, its causes, effects and impact on people and our economy. There are currently over 50 million people in the United States alone that have been affected by autoimmune diseases. Some are simply annoying, some are life changing and some are life threatening. All these little pieces were slowly coming together like a giant 10,000 piece jig saw puzzle. As we continued our research, God has put people in our path to help us. We learned that gluten and food allergies along with toxins in our food supply are suspected to play a huge role in autoimmune disease. Genetics only play a small role, about 30%. For more information, I highly recommend the book “The Autoimmune Epidemic” by Donna Jackson Nakazawa.
We found a nutritionist to help us get the family on a gluten free diet and help us to eliminate the bad stuff. Dan and I however, refuse to give up wine or chocolate. J We found out after over 20 years of being virtually fat free, that some forms of saturated fat is good for you! Shoot! We could have had butter! We also found out that Kaity has gluten intolerance and that could be the reason for her tummy aches and short stature (along with the Mikkelson genes). Luckily we found this information now while we can still do something about it from a proactive rather than reactive position. God again put us in touch with a wonderful M.D. to help us to understand the supplement and alternative medicine side of health care to help us heal. I was so incensed by some of the things I was learning particularly about food additives and vaccines, that I started a blog to tell others. http://planetplutto.blogspot.com. Now I have to admit, I have been slacking on that lately but if you are on Facebook, I am reposting the stuff I am finding out on an almost annoying regular basis. It is because I love you, my dear friends, that I do this.
Also with the love and support of my friends, especially my cohort, Gigi, we started a Food Sensitivity Support Group at our Church. We are reaching out to people to lend support, information, share recipes and the best of all, samples!
I found an acupuncturist to help us quiet down Nick’s nervous system. When Nick decided needles were not for him, God put me in touch with a renowned accupressurist, and her daughter, who is amazing in her own right and now one of my dearest friends. It is amazing to watch the difference in Nick after his treatments.
We were referred to a counselor to help us deal with the overwhelming feelings we were having about Nick’s situation and to help him deal with his depression. Since then, he has worked on resolving issues that have haunted him since elementary school. He has returned to his goofy, humorous, sweet self. Instead of being indifferent or hostile towards his sister, he now is somewhat protective and when those two get to horsing around, it is like music to my ears. I had prayed for that for so long. God does listen.
One Doctor I called about getting some help with Nick’s eye referred me to Boulder Vision Therapy to help him adapt to monocular vision but also to see if we could enhance any vision he might have in his left eye. Then she called me back to make sure I made an appointment with BVT! What doctor do you know that does that? He has regained a small amount of sight in his left eye which enables him to see some 3D. I believe in my heart, some day, some way, he will regain the sight in that eye. We are still looking into other options including stem cell therapy which is very promising. We are kind of waiting for them to work the bugs out first. We also found out that Kaity had a convergence excess which was the cause of her difficulties with reading despite being such a very intelligent little girl. She is doing very well with Vision Therapy herself and will catch up with her classmates in no time. This was no coincidence.
We are in touch with the University of Texas, University of Colorado and the Accelerated Cure Project which has researchers around the world working on this. We are keeping close tabs on the new and exciting research that they are pursuing. The word cure is being used a lot in their communications.
I could go on and on, but the point is by God’s love and grace, we are doing so much better these days. We have a lot of hope and a lot of gratitude for all of the wonderful people he has put in our lives to help us. We hope to help others that have been put in our path. We are also very grateful for all of our dear friends and all of your prayers. Believe me, we feel them. Thank you so much for keeping us close in your hearts!
On behalf of the entire Plutt Family, we wish you all a very Merry and Blessed Christmas. Best of health and happiness in the New Year to you and your family.
Love,Annette, Dan, Nick & Kaity