Welcome to Kylie’s CaringBridge website. The information you will read or see is not going to be necessarily in the right grammatical format, spelled correctly at times or even make sense unless you follow our crazy "squirrel" personalities. This is merely an avenue for Chad, Kylie and myself to document our journey of an unbelievable year so far and hopefully give you insight to a condition we had no clue about. We are using it to keep family and friends updated all in one place. People keep asking us what they can do and what we need. We need prayers for Kylie's large team of physicians, prayers that we find the right combination of treatment for Kylie, Kylie's strength to continue until we can get her into remission and for our family during this time. We appreciate your support and any words of hope and encouragement you can share with Kylie. Being a teenager and looking forward to a very exciting right of passage has been tough. She should be enjoying being nervous about heading into high school, hanging with friends during the summer, playing HS volleyball and most importantly to her - being able to go to the lake. But life has thrown a curve ball and all of that has all been minimized or completely stopped. We hope this is only temporary and that her health will improve and she will lead a more normal and active life. But for a social butterfly and a very active teenager - the restrictions have become torture!
As many of you know, Kylie was recently diagnosed with Minimal Change Disease. This is a nephrotic syndrome that is absolutely new to all of us and our families. As we have had to obtain genetic information, it has become obvious that none of our families had heard of this or knew anything with the specific symptoms that Kylie was/or/is currently presenting. But, after digging further and trying to be respectful in asking family members about their personal medical information, we have quickly all been educated over the last month about how amazing our bodies are and how complex the functions can be. The one thing I will caution anyone reading this is... there are no hard cut answers and how hard of a lesson that has been for us to learn. We don’t know exactly what causes this or why she is just now showing signs and symptoms. Everyone is different, but this type of disease is most common in a much younger age group. In addition, there will always be speculations of why someone has this or why it can or can’t it be treated quickly and things go back to normal. But honestly, we do not have a definitive why and been told by multiple doctors that we will more than likely not ever know. Which for two controlling parents it has been so frustrating. So all we can do is share our story and pray that what we share helps people to pay attention to their bodies, watch their loved ones closely and not be afraid to question something if it just does not feel or look right.
Since this is all new to us, we will do our best to keep it updated and accurate as we know it. However, we would ask for patience as this disease and information we are receiving is new and at times very overwhelming to us all. The two things we have learned in this journey so far is first how amazingly strong Kylie is and her endurance for dealing with these new “norms” such as dipstick testing, pills morning and night, lathering body with disinfectant and researching foods for a low sodium diet. It just reminds us of the small blessings and how appreciative we should be for our faith, families and our health. The second thing we have felt and witnessed is the love and support for our family. It means so much to us the concern and care that has been provided. So thank you!