Remembering Kayla Vittek on International Myotonic Dystrophy Awareness Day

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! 

Happy #InternationalMyotonicDystrophyAwarenessDay!

Happy International #MyotonicDystrophy Awareness Day! Join MDF and special guests, including members of the Global Alliance and singer-songwriter Eric Hutchinson, for an hour of celebration and education at 12 PM Pacific! Start raising myotonic dystrophy awareness before the show at https://Inkd.in/gS2iCTB

#MyotonicDystrophy

#InternationalMyotonicDystrophyAwarenessDay

#MyotonicDystrophyAwareness

#MyotonicDystrophyFoundation

#CureForKayla

Read the joint Press Release here and explore more about the Global Alliance members below.

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.

0:00 - Intro to Day 2 of MDF Family Conference & Remembering 9/11 - Tanya Stevenson, MDF CEO 
3:20 - Intro to Stories of Inspiration - Tanya Stevenson, MDF CEO

3:50 - 3rd Annual Kayla Vittek Memorial Award for Outstanding Community Advocate - Lisa Harvey-Duren, MDF Founding Executive Director & Kayla's Mom

7:53 - Alexandra LeBoeuf, Artist, and winner of the International DM Awareness Day Logo contest

21:38 - Julie and Michel LeBeouf, Parents of Alexandra LeBeouf

I'm honored to introduce you to Alex! 

International Myotonic Dystrophy Awareness Day Logo created by Alexandra LeBeouf

#MyotonicDystrophy

#InternationalMyotonicDystrophyAwarenessDay

#MyotonicDystrophyAwareness

#MyotonicDystrophyFoundation

#CureForKayla

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. 

We shared a video of Kayla’s life which of course brought me and others to tears but it was also very healing to know that she can still make an impact. We were able to educate over 90 new students in their first week of medical school so they know what to look for as they begin diagnosing patients in the future. The new young doctors grilled us with thought provoking questions and thanked us for sharing Kayla’s story with them. As this disease is genetic they were able to see 3 generations of how this disease affects families. I left the meeting feeling so grateful for having this incredible opportunity. I hope Kayla was looking down on us with pride that we are continuing the work we started together so many years ago. ❤️ 😇

Learning to Mourn Heroically

In my grieving process, I've been reading a lot of books in search of healing for my shattered heart.  I am just beginning to process Kayla's loss as my brain physically shut down the moment we found her lifeless body in her bed the morning of April 9th. We tried to resuscitate her to no avail which is by far the hardest thing I've had to face in my life. I spent the first couple of months after her death in bed sleeping most of every day away as I just couldn't face my new reality. I had pneumonia when Kayla died and was really struggling to breathe after staying in bed for so long. I finally decided to get up and start taking care of myself. Over the last few months I have gotten up every morning and have given myself Grace and permission to care for my health. As the months have passed, I feel a sense of small improvements in my thinking returning. I think it will be a long time until my body fully recovers from the blow of losing my sweet Kayla.

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. 

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

Kayla's on the news on KCRA in Sacramento

When Lisa Harvey-Duren, founding executive director of MDF, tragically lost her 13-year-old daughter Kayla Vittek to heart-related complications of the disease in April 2019, she launched a fundraising campaign benefiting Myotonic Dystrophy Foundation on Facebook, which to date has raised over $18,000 to help drive Care and a Cure for myotonic dystrophy. A lovely and moving tribute to Kayla’s life can be read here. To honor and acknowledge Kayla’s numerous appearances to help raise awareness and funds for myotonic dystrophy research and care, and Lisa’s long-time commitment to the foundation and the DM community, MDF will be presenting the Kayla Vittek Memorial Award for Outstanding Community Advocate at the 2019 MDF Annual Conference. Nominations for the award have been submitted by MDF’s advocacy team in Washington, DC to the MDF Board of Directors, which will make the final outstanding advocate selection. We hope you can join us in Philadelphia in September for this award presentation, either in person or via the conference Livestream. Our hearts go out to Lisa and her family for this completely devastating loss, and we are deeply grateful for her ongoing commitment to Care and a Cure.

Source: MDF website: https://www.myotonic.org/fundraising-campaign-and-advocacy-award-created-celebrate-life-kayla-vittek

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)

Kayla Michele Vittek's Obituary

KAYLA MICHELE VITTEK
July 28, 2005 – April 9, 2019 

Resident of Santa Cruz, CA

Kayla Michele Vittek, a beautiful, bright and deeply cherished 13 year-old girl, died peacefully in her sleep in the early morning hours of Tuesday, April 9, 2019. Kayla lived with her mother, Lisa Michele Harvey-Duren, her step-dad Paul Duren and her ten year-old sister in Santa Cruz.

Kayla embraced those that she trusted with her whole heart. For those special people that she let in, she showed a side of herself that not everyone got to see. She had a great sense of humor, she was gentle, kind, empathetic and she genuinely loved life. Kayla loved showing her affection by planting gentle kisses on her loved ones faces. She also gave the most amazing hugs. She loved to dance and adored music from an early age. She especially loved the music of Eric Hutchinson and wouldn’t go to sleep at night until we played his songs. Kayla has blessed our lives and her spirit will live on forever in our hearts.

Kayla was born at Sutter Memorial Hospital in Sacramento, California in 2005. She began her early intervention and education in Rocklin, CA, and transferred to the Soquel Union School District in Santa Cruz County in Kindergarten in 2011. She attended Soquel Elementary School, followed by almost three years at New Brighton Middle School, where she excelled academically thanks to the devoted care of her academic aides and teachers. Despite physical challenges, speaking problems due to the disease and hypersensitivity to sounds, she made the honor roll at New Brighton every semester and was just two month away from graduation and advancement into high school. Kayla loved to read and especially loved science and humanities. Her unexpected success in all facets of her life was miraculous considering the severity of her disease. She was not expected to survive her first year, nor to ever walk or talk. During her final year at New Brighton, she was invited to participate in the student council.

Despite her difficulties with mobility, Kayla loved sports, beginning at age three with horseback riding (hippotherapy) at Ride-To-Walk, and continuing with baseball and soccer from age 7. Kayla played baseball in the challenger league with the Angels, a team made up of individuals living with disabilities. Kayla’s father Jeff loved playing baseball with Kayla on their visits together. In their first game of this season, the weekend after Kayla passed, the Angels had a moment of silence in memory of Kayla and then played her walk-up music, Brave by Sara Bareilles. Kayla participated in Ride-A-Wave and Day at the Beach over the past 6 years. She participated in Day of Discovery snorkeling program at Monterey Bay Aquarium for the past few years. She was a recipient of Make-a-Wish Foundation gift to travel to Hawaii with her family in 2016. Kayla’s favorite event every year was by far MDA camp for kids living with muscular dystrophy. Kayla attended this camp since the age of 6 and with her very special friend Kali for many years and then this past year with Kali, Zoe and Cambry who all live with DM1.

Kayla faced a life-long struggle with congenital myotonic dystrophy (DM1), the most prevalent form of muscular dystrophy. Under the care of her mother and her medical team at Lucile Packard Children’s Hospital at Stanford, led by the chair of the Neuromuscular Department, Dr. John W. Day, MD, PhD., Kayla flourished. She became known throughout the global community of DM patients and caregivers through her blog, www.cureforkayla.com as many newly diagnosed patients would find Kayla’s story of hope and would reach out to us. Because of Kayla's struggle, her mother Lisa helped to found and became the founding executive director of the Myotonic Dystrophy Foundation (MDF), which funds research into this genetic disorder and provides support to families living with this disease.

Kayla appeared regularly in news stories and on television over the past 13 years and she and her mother were spokespeople and strong advocates for DM. Kayla was named the Youth Ambassador for Easterseals Superior California in 2006 and her story was aired on the Sacramento news. Kayla’s story was updated every year on the Sacramento Muscular Dystrophy Association (MDA) Jerry Lewis Telethon from 2006 to 2008 and she was the 2009 face of myotonic dystrophy on the National MDA Jerry Lewis Telethon where she appeared with her father Jeff and her mother Lisa. In 2014 Kayla and Lisa testified in Washington D.C. in a Congressional hearing in support of the reauthorization of the MD-CARE Act which was eventually granted. Kayla participated in a longitudinal research study of congenital myotonic dystrophy patients every year for the last five consecutive years at the University of Utah. Kayla also participated in research at Stanford University. Kayla was about to begin a clinical trial at Stanford for a new drug that improves executive functioning. These are just a few of her accomplishments in her short life.

Kayla was predeceased by Robert and Patricia Vittek, paternal grandparents; June Hull Ferguson, great aunt; and Stephen Harvey, maternal uncle. She is survived by her other family members, who mourn her loss and cherish her memory: Lisa Harvey-Duren, mother; Jeff Vittek, father; Paul Duren, step-father, and her sister; Jane Hull Harvey and Rev. Pharis Harvey, maternal grandparents, Dr. Kathryn Harvey, maternal aunt, Christopher Harvey and Roxanne Ward Zaghab, maternal uncle and aunt; Mitch Vittek, paternal uncle; Rich and Sue Vittek, paternal uncle and aunt; Daniel Harvey, Noelle Pruett, Maya Pruett, Kathryn Harvey, Brenan Batten, Logan Batten, Andie Lee Batten, maternal cousins; Shelby Vittek, Lindsay Vittek and Sarah Hollenback, paternal cousins.

There will be a Celebration of Life of Kayla Michele Vittek at Aptos United Methodist Church on Saturday, April 27, 2019 at 11:00 a.m.. Please RSVP for the event or the live stream.

In lieu of flowers, please consider making a donation to either the Muscular Dystrophy Association or the Myotonic Dystrophy Foundation and note in the memo: Kayla Vittek memorial fund. 

Please leave messages for Kayla's family in the comments below. 

Kayla Vittek's Story on 2009 MDA Telethon

New Beginnings - A Day To Remember

Our Wedding Day - September 12, 2015

As most of you probably know, I met a wonderful man at the end of 2014 and on September 12, 2015 we were married. It just happened to be the same date 10 later to the day of Kayla's diagnosis of Congenital Myotonic Dystrophy (CDM), Paul and I  had a small but beautiful celebration at our home in Capitola and had our ceremony at the end of our street overlooking the Monterey Bay. My father married us and both of our mom's did readings. My sister Kathy was my maid of honor and Paul's friend Ray Schaeffer was Paul's best man. Kayla was so amazing that day and kept asking "we're a family, right?". I think she has longed for me to settle down for a long time. I will be changing my last name from my maiden name of Harvey to Harvey-Duren. Kayla will remain Kayla Vittek.

We were so honored to have her amazing neurologist from Stanford, Dr. John W. Day and his lovely wife Suzanne join us for our wedding day. Kayla was over the moon to see him and spend time outside of the clinic visiting with him. 

Paul has been such a blessing in our lives and although he never had kids of his own, he's jumped head first into the step-father role like he had lots of experience. He and Kayla have a really special bond and it just warms my heart to see them together.

It was truly a magical day to remember and a great start to our new life together.