Wednesday, February 28, 2018

Rare Disease Day 2018

Hi Friends! I can NOT believe how long it has been since I posted here but wanted to share a video in case anyone still checks this page (: Evie is doing so great, and we are so thankful to our Heavenly Father for his provision in her life and His constant presence in our home and hearts!!

Evie: Rare Disease Day Video

Love you friends!


  1. I think about Evie often. Thank you for posting this!!

  2. I check back often to see if there are any posts. Delighted to see how Evie has become quite the young lady. My thoughts and prayers are with you and your family as you continue to live your life one day at a time.

  3. I needed this, thank you.

    I was diagnosed with MS as a teenager. I struggled terribly through my college years. I don't remember how, but it was during that time that I somehow found your blog. Following Evie's story, seeing the strength of her and your entire family inspired me to not only stay strong and keep fighting, but to look outside the box in doing so. I was driving to class one day when I heard about a clinical trial for a new MS medication. With Evie in mind and having nothing to lose, I called and soon became part of the trial. I began improving steadily and the girl who was once afraid she'd never even finish her degree or be well enough to have the things she's dreamed of is now a woman with a college education and a beautiful family of her own.

    I had a setback lately and have been feeling pretty down. I happened to see your blog in my bookmarks and click over to see if there was anything new. Seeing Evie doing so amazing, seeing her strength and perseverance; it reminded me of how far I've come and reminded me that I can keep on going.

    So happy for all of you on the continued progress and happiness. Wishing you all the best!