Wednesday, August 28, 2019

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. 




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


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.


Saturday, September 12, 2015

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. 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. 

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. 

Friday, August 29, 2014

Stanford Medical Students Learn About Myotonic Dystrophy First Hand


Left to right: Jane Hull Harvey, Lisa Harvey, Kayla Vittek (front), Dr. John W. Day and Dr. Gilbert Chu

Kayla, my mom Jane and I traveled to Stanford Medical School this morning to meet with the first year medical students for a class in nucleotide repeat diseases. Myotonic dystrophy is a nucleotide repeat disease so we were able to share our story and help these young students to understand how this disorder impacts a family medically, socially, educationally, and financially to name a few. We had lots of great questions from the students and the feedback after was very positive. It is so healing to know we are making a difference in these future doctor's lives when it comes to diagnosing and caring for patients with this disorder. I'm feeling very grateful for the opportunity.




Wednesday, June 11, 2014

DOCTORS TREAT MULTIPLE GENERATIONS AT STANFORD CLINIC



PALO ALTO, Calif. (KGO) -- For 9-year-old Kayla, a recent ride on a surfboard at a special program in Santa Cruz, was something of a miracle. Born with a neuromuscular condition called Myotonic Dystrophy, Kayla has struggled just to walk and develop normal muscle function. Her mom, Lisa Harvey says the fight began just moments after her birth.

"You know, they actually said you can choose to pull life support and I was devastated. And I said, 'We don't even know what this is, let's fight and see what we're dealing with first,'" Harvey remembers.

Kayla's progress is being tracked at a unique clinic at Stanford Hospital. It's set up to study and treat congenital diseases that may stretch back generations. In Kayla's case it's at least three generations, including her mom and grandma, Jane Harvey. Clinic director Dr. John Day says treating the family together allows researchers to better gauge the effectiveness of new therapies.

"If everybody is receiving a different treatment, then when we start to introduce a new treatment modality, it's not going to be clear if it's working," says Day.

Read more and watch the video

Monday, June 9, 2014

Clinical Trials for Myotonic Dystrophy Have Begun

ISIS Pharmaceuticals is developing a drug (ISIS-DMPKRx) to treat Myontonic Dystrophy Type 1 (DM1, also called Steinert’s Diseases). DM1 is a dominantly inherited, degenerative disorder that affects many systems in the body. DM1 is mainly characterized by progressive muscle wasting, weakness, and myotonia, but additional clinical features include early cataracts, cardiac conduction dysfunctions, hypersomnia, gastrointestinal abnormalities, insulin insensitivity, and infertility. DM1 is estimated to affect 1 in 8,000 people worldwide, or approximately 150,000 patients in the US, Europe and Japan. Currently, there are no disease-modifying therapies for patients with DM1 and treatments are intended only to manage symptoms. ISIS-DMPKRx is an antisense drug being developed for the potential treatment of DM1. ISIS-DMPKRx is currently being studied in a Phase 1 study in healthy volunteers to evaluate its safety. 

Learn more: print the trial fact sheet

Friday, February 28, 2014

Kayla Takes On Capitol Hill

On February 25th, Kayla and I traveled to Washington DC to testify at a Congressional Hearing to support the passage of the reauthorization of the MD-CARE Act. It was a life changing event and Kayla did a remarkable job reading her speech. There were hundreds of people attending and she wasn't intimidated at all. I'm so incredibly proud of her.

Lisa Harvey and her daughter, Kayla Vittek, both of whom have myotonic dystrophy, testified at the hearing. Harvey said that the MD-CARE Act "has already saved lives, and with this needed reauthorization, it has the potential to save millions of lives in the future."


MD-CARE Act Congressional Briefing Accelerates Reauthorization Momentum


"The energy in the room was high, and the mood was optimistic," said Annie Kennedy, MDA's senior vice president of advocacy, speaking about the Congressional briefing on reauthorization of the MD-CARE Act that she attended and helped to organize. The briefing was co-hosted by MDA and other muscular dystrophy organizations in Washington, D.C., on Feb. 25, 2014, and was attended by some 250 people — Senate and House staffers, researchers, advocates and members of the muscular dystrophy community.
Kennedy emphasized that the legislation is an example of a highly successful partnership between public and private entities.

"We're cautiously optimistic that reauthorization of this landmark legislation is possible," Kennedy said, adding that it's imperative to keep the momentum going by encouraging legislators to sign on to reauthorization of the Paul D. Wellstone Muscular Dystrophy Community Assistance Research and Education Act Amendments (MD-CARE Act) of 2014 (H.R. 594/S. 315).

"The MD-CARE Act has leveraged significant breakthroughs in many of the nine muscular dystrophies," Kennedy said, "including research discoveries, therapeutic advances and quality-of-life improvements for those living with muscular dystrophy."

The Feb. 25 congressional briefing highlighted three major MD forms — Duchenne muscular dystrophy (DMD)myotonic muscular dystrophy (MMD, or DM), and facioscapulohumeral muscular dystrophy (FSHD), with testimony by patients, parents, experts in the field, and representatives of advocacy organizations, including MDA CEO Steven M. Derks.

In addition to MDA, Parent Project Muscular Dystrophy (PPMD) and the Federation to Eradicate Duchenne (FED) helped organize the briefing.

Among the presenters were California residents Lisa Harvey and her daughter, Kayla Vittek, both of whom have MMD. Kayla was born with the severe congenital form of the disease and required a ventilator to breathe when she was born. At age 4, she was using American Sign Language to communicate. Today, she's in third grade, is able to speak and read her own testimony at the briefing.

"Today, families living with this disease have a real reason to have hope, as later this year the first clinical trials will begin for myotonic dystrophy," Harvey said in her testimony. "This hope sustains us all and motivates us to do all we can for our families. I speak for the entire community of families struggling with muscular dystrophy when I say that the MD-CARE Act has already saved lives, and with this needed reauthorization, it has the potential to save millions of lives in the future."...Read more





Wednesday, October 16, 2013

Kayla is making an impact

Well, I'm glad to see that Kayla is continuing to make an impact. She inspires me every day to be a better mom. TREAT-NMD recently used some of Kayla's pictures in their brochure and website.

ABOUT TREAT-NMD

"TREAT-NMD is a network for the neuromuscular field that provides an infrastructure to ensure that the most promising new therapies reach patients as quickly as possible. Since its launch in January 2007 the network's focus has been on the development of tools that industry, clinicians and scientists need to bring novel therapeutic approaches through preclinical development and into the clinic, and on establishing best-practice care for neuromuscular patients worldwide."

Brochure - Page 10

Website - Overview - About Myotonic Dystrophy