I had a high school classmate die from this tragic disease years ago, and his sister was so sweet to give me a quote about her brother for my article.
One thing that struck my heart ... no matter what hardships we endure ... in life and in death, God continues to use our lives and our testimonies. I praise Him for that. I praise Him that when our lives are over, they aren't "over." Not eternally and not on this earth.
May you be blessed.