Sep 11, 2017 Latest post:
Apr 29, 2018
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
Michelle was diagnosed with ALS on January 27, 2017. That day changed our lives forever. With the grace of God and support from our family and friends we have found strength and acceptance to take on the daily struggles. The monsters never give her a break and have taken away her mobility and independence. She still has a great sense of humor and lovely smile we all cherish. She helps us find laughter in every day and has given new meaning to the word chair dance.
The FDA approved a new drug on May 5, 2017 "Radicava". This is the first drug in 22 years for ALS and helps slow the progression by 33% and has been used successfully in Japan and Korea for the last 2 years.
Michelle has never been known to sit by quietly and has been very proactive with working with the insurance company, Searchlight Support and Sanford to complete paperwork, get a prescription and have a caseworker assigned by Searchlight to help get things approved quickly with insurance and help get the medicine to Sanford.
On September 8th, Michelle had a port installed and she will begin receiving infusions of Radicava on September 11th. The infusions are daily for 14 days and then 14 days off and another 10 day cycle every 14 days. This drug will help slow the progression which so far has been fairly rapid. We stay hopeful and have been actively pursuing clinical trials for stem cell research to give her back some mobility. There is always hope and we are so grateful for all your encouragement and support.