In honor of International Myotonic Dystrophy Awareness Day today, September 15, 2021, I'm posting a slideshow of my daughter Kayla's life. We miss Kayla every minute of every day. I'm working hard to help in the fight to find treatments for myotonic dystrophy so that Kayla's friends and family can have a full and healthy life. I'm so proud of my little girl for never saying no to my constant push to advocate for this disease. She was my "can do" girl and I'm so incredibly honored to be her mom. See you in the light of the moon Kayla!
Wednesday, September 15, 2021
Happy #InternationalMyotonicDystrophyAwarenessDay!
Sunday, September 12, 2021
3rd Annual Kayla Vittek Memorial Award for Outstanding Community Advocate Goes To...
Let me introduce you Alexandra LeBoeuf, the winner of the 3rd Annual Kayla Vittek Memorial Award for Outstanding Community Advocate for her work in designing the logo for our 1st International Myotonic Dystrophy Awareness Day today, September 15, 2021.
Watch this brave and inspiring young lady living with juvenile-onset myotonic dystrophy share her story. She's an inspiration to the community of families and researchers working around the world to treat and cure myotonic dystrophy.
3:20 - Intro to Stories of Inspiration - Tanya Stevenson, MDF CEO
I'm honored to introduce you to Alex!
International Myotonic Dystrophy Awareness Day Logo created by Alexandra LeBeouf |
Thursday, August 26, 2021
Celebrating Our 9th Year of Training the Stanford Medical Students about Myotonic Dystrophy
This morning, my mom (Jane), my dad (Pharis), Paul and I met with the first year medical students from Stanford University for the 9th year in a row. Every year we all look forward to this day and Kayla always loved meeting the students as we helped them to understand the impacts that myotonic dystrophy can have on a family. This year was over Zoom so it was definitely different but it was still an incredible experience.
Wednesday, August 28, 2019
Learning to Mourn Heroically
Today I picked up Grief One Day at a time by Alan D. Wolfelt, Ph.D. and the reading for today really spoke to me. "When my soulmate dies, the only way to heal my grieving soul is with mourning that is as large as my love." I am learning to mourn heroically.
Thursday, July 18, 2019
Advocacy Award Created to Celebrate the Life of Kayla Vittek
Lisa Harvey-Duren and Kayla Vittek Congressional Hearing for the Reauthorization of the MDCARE Act Hart Senate Building, Washington, DC, February 23, 2014
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Saturday, April 27, 2019
Kayla's Celebration of Life - April 27, 2019
Our beautiful, sweet Kayla unexpectedly passed away peacefully in her sleep on the morning of April 9, 2019, likely due to sudden cardiac death related to myotonic dystrophy (DM1). We are still waiting on the final pathology reports. Our hearts are forever shattered. For all of the challenges that Kayla faced over the years, she also got to experience so many amazing adventures in her short life. We all have so many incredible memories from her 13 years and 8 months together. Her death has come as a shock to us all, especially as we were preparing to have an implantable cardiac defibrillator placed in a few weeks from her death. We all wish she had more time with us but we try to remain grateful for the precious time that we were gifted by this beautiful brown eyed girl with a heart of gold.
Thank you to everyone who joined us for her Celebration of Life in person or on our live stream. Our family is grateful to all of you for your support during this incredibly difficult time. And a special thank you to my wonderful husband Paul and my dear friends and family who have held me up as I face this unimaginable time in my life. We also want to thank everyone who helped to coordinate Kayla's Celebration of Life, especially Rev. Anthony Fatta from Aptos Community United Methodist Church, Kayla's home church. She loved attending church on Sunday morning with my parent's Pharis and Jane.
(NOTE: The service starts at :35 so you may want to fast forward as we turned it on early to ensure that the broadcast worked well. The direct sound connection failed but the sound is better than we expected considering)
Thursday, April 25, 2019
Kayla Michele Vittek's Obituary
July 28, 2005 – April 9, 2019