Sad Day for Myotonic Dystrophy Community

We were saddened to hear of the Death of Kayla who was brave and choose to be the face of this disease. She warmed everyones heart, now the hearts are a little colder.


Kayla Michele Vittek’s Obituary

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, 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 Foundationand note in the memo: Kayla Vittek memorial fund. 
Please leave messages for Kayla’s family in the comments below.

New Book about a Family with Myotonic Dystrophy

There are not many books about myotonic dystrophy. There is a fictional series about a skater that has myotonic dystrophy. I wrote a short book about the hopes and aspirations of my son “The boy who was President”. Now comes a great biography about a family with Myotonic Dystrophy. A must read for all with the disease. Here’s a short introduction:

As a young girl, my constant goal was to help my brother, Dustin, walk. Dustin’s limits were hard to gauge because he constantly surpassed expectations. He was born with congenital myotonic dystrophy and expected to die, then to live three months, then three years. Instead, he gained strength and capabilities until age 13, when he had a simple cold and just did not wake up from his nap. His body became too much for the largest muscle in his body, his heart.

While Dustin was alive, I threw quarters in wells, prayed every night, and practiced with him every day after he had surgery and got corrective braces. I would stretch my brother’s legs, rotate his ankles, do resistance exercises and help him practice standing. At age 12, I thought willpower was so strong that, through perseverance and dedication, I could will my brother to walk.

Three years older than my brother, I grew up doing adult caretaking tasks. Through the years, I would change thousands of diapers, brush Dustin’s teeth, lift him into bed, administer nebulizer treatments, clean his feeding tube, watch him when both my parents had to work, bathe him, unload his wheelchair from the bus and play with him. Most things I did for my brother were helpful, but with my conceptions about willpower and Dustin walking, I pushed my brother past his comfort level more than once and caused more pain than progress. For me, a healthy sibling, willpower was a tool to push past obstacles. However, the same view I took of my young healthy body proved detrimental to my brother’s and caused him pain.

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Causes of Death Myotonic Dystrophy – Survival to age 65 lower

This is an older study from 1998 but many folks ask about the longevity with this disease. How long will I live with myotonic dystrophy?

Age and causes of death in adult-onset myotonic dystrophy.


(1998) 121 (8): 1557-1563. doi: 10.1093/brain/121.8.1557

  1. C E de Die-Smulders,
  2. C J Höweler,
  3. C Thijs,
  4. J F Mirandolle,
  5. H B Anten,
  6. H J Smeets,
  7. K E Chandler and
  8. J P Geraedts

+ Author Affiliations

  1. Department of Clinical Genetics, Academic Hospital Maastricht, The Netherlands.


Myotonic dystrophy is a relatively common type of muscular dystrophy, associated with a variety of systemic complications. Long term follow-up is difficult because of the slow progression. The objective of this study was to determine survival, age at death and causes of death in patients with the adult-onset type of myotonic dystrophy. A register of myotonic dystrophy patients was set up in Southern Limburg (the Netherlands), using data longitudinally collected over a 47-year period (1950-97). Survival for 180 patients (from the register) with adult-onset type myotonic dystrophy was established by the Kaplan-Meier method. The median survival was 60 years for males and 59 years for females. Survival of the patients was also estimated from the age of 15 years to the ages of 25, 45 and 65 years and compared with the expected survival of age- and sex-matched birth cohorts from the normal Dutch population. The observed survival to the ages of 25, 45 and 65 years was 99%, 88% and 18% compared with an expected survival of 99%, 95% and 78%, respectively. Thus, survival to the age of 65 in patients with adult-onset myotonic dystrophy is markedly reduced. A weak positive correlation between the CTG repeat length and younger age at death was found in the 13 patients studied (r = 0.50, P = 0.08). The cause of death could be determined in 70 of the 83 deceased patients. Pneumonia and cardiac arrhythmias were the most frequent primary causes of death, each occurring in approximately 30%, which was far more than expected for the general Dutch population. In addition, we assessed mobility in the years before death in a subgroup of 18 patients, as a reflection of the long-term physical handicap in myotonic dystrophy patients. Half of the patients studied were either partially or totally wheelchair-bound shortly before their death.

Case Reports of Pregnancy and Myotonic Dystrophy

With the correct diagnosis myotonic dystrophy can be prevented for the next generation. By using pre-implant diagnosis the next generation can be assured not to have myotonic dystrophy. This is an expensive and not practical approach in all countries though.  This blog contains  case reports from Pakistan of two case studies.

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Celebrating the Life of Sheila Hollern

I was just informed of the passing of Sheila Hollern who is a relative of Jeremy and Erica Kelly, both instrumental in the Myotonic Dystrophy Foundation. Its so sad to see these deaths when we fervently hope that a cure is around the corner. Our thoughts and wishes are with the family members and we will continue the fight to find a cure for this disease that slowly and quickly takes loved ones away

Sheila Brooks Hollern

Last modified: January 16. 2013 12:11PM PST

Sheila Brooks Hollern passed away peacefully in San Francisco on January 15 from cancer and post-surgical complications from Myotonic Dystrophy.  She was 48.

Sheila was born in Palo Alto, California and grew up in Bend.

Sheila spent most of her life in Marin County, California where she volunteered her time at the Cedars Development Foundation and Marin General Hospital.

Sheila spent many happy hours surrounded by friends who entertained and were entertained by her and had a loyal following of family, friends, relatives and dear girlfriends who shared her life in San Anselmo.

Sheila took great pride in decorating her apartment, where every inch of her walls were covered with photos and memories of a happy life.  She enjoyed traveling with her family and her boyfriend of 25 years, Brad McKinsey. Sheila was devoted to her family, her many friends and especially her beloved cat, Midnight.

Sheila is survived by her parents, Mike and Sue Hollern; her brother, Chris Hollern; her sisters Erica Kelly (Jeremy Kelly) and Leslie Lynch (Gene Lynch) and six adoring nieces and nephews.

A private, family remembrance is planned.

In lieu of flowers, donations would be gratefully accepted by Lifehouse, a Bay Area organization dedicated to helping people with developmental disabilities. Lifehouse was instrumental in making Sheila’s life happy and productive. Their address is 899 Northgate Drive, Suite 500, San Rafael, CA 94903 or donations can be made online at