I’m helping build a Capitola park for kids with special needs. My late daughter Kayla would have loved it.

By Lisa Harvey-Duren

Kayla could have benefited from more inclusive playgrounds. Credit: Via Lisa Harvey-Duren 

Lisa Harvey-Duren lost her beloved daughter Kayla nearly five years ago to a genetic condition. During her short life, Kayla radiated joy and fought the odds to survive and thrive, Harvey-Duren writes. Kayla could have benefited from more inclusive playgrounds for children with special needs. Now, the City of Capitola is set to create one at Jade Street Park and nonprofit County Park Friends has launched a $1 million fundraising campaign to help cover the $1.82 million cost. Despite Americans with Disabilities Act regulations, most playgrounds are not accessible for kids with disabilities. “Can you simply imagine how discouraging that is for a child and their family?” Harvey-Duren says.

If my daughter, Kayla Michele Vittek, had lived, she would have turned 18 this year.

Kayla was a sweet, kind, funny and compassionate child who loved making people laugh and spending time outside. She was lucky to live in a place like Santa Cruz that offers many inclusive activities for special needs kids, like Shared Adventures, Ride A Wave, Challenger baseball and soccer and Muscular Dystrophy Association camp.

In all those places, she had the support she needed to feel the wind whip her face and experience the thrill of just being a kid. 

I wish more of her life was spent that way. That is why I am now working to help create a playground at Jade Street Park in Capitola for kids like Kayla.

Lisa Harvey-Duren’s daughter Kayla was born with congenital myotonic dystrophy. Credit: Via Lisa Harvey-Duren

We found out Kayla was different on the day of her birth, when she was diagnosed with congenital myotonic dystrophy (cDM1), a complex genetic disorder that would limit her life in numerous ways. She spent 105 days in the neonatal intensive care unit and nine months on a ventilator with a tracheostomy and using a feeding tube. Kayla came home for the first time at almost 4 months old transported in an ambulance.

It was a terrifying time for our family, as the doctors gave her a grim prognosis.

But Kayla had different plans and quickly began to show incredible amounts of determination and strength. For a long time, I wasn’t sure she would survive the obstacles that faced her, but she did.

Each time she overcame an obstacle, I got stronger. She made me fight harder and work to give her the best opportunities possible.

Her doctors didn’t expect her to see her first birthday, but she lived 13 years and eight months full of amazing adventures and lots of love. She defined joy for me. I sometimes wished that I could bottle up the joy she emanated. I knew I would need it later.

Read article in the Santa Cruz Lookout 

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

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

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

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

"Ride To Walk" Therapeutic Horse Therapy Program Loses Government Funding

I wanted to share a story that aired on Sacramento's Channel 10 this morning about Kayla's Horse Therapy, "Ride To Walk". Kayla was one of two kids highlighted in the article and video. "Ride To Walk" lost it's government funding recently due to budget cuts as the government feels this is a recreational activity and not therapy. It's such a shame as it has helped Kayla so much, not only to gain confidence but to get stronger and to begin talking. The therapeutic affects of horse therapy are incredible and programs like this should never be cut. What is the government thinking! I guess not too many government officials have kids with disabilities because if they did, programs like this would be supported.



Source article: http://www.news10.net/news/local/story.aspx?storyid=70437

LINCOLN, CA -- A program that helps children with disabilities through horse-riding needs some help of its own. "Ride to Walk" in Lincoln has experienced large budget cuts over the past year, which has greatly reduced the number of children it can help.

The parents of the kids enrolled in the program say it's improving their lives exponentially. Lisa Vittek has a 4-year-old daughter with severe muscular dystrophy and says the therapy makes her daughter more limber.

"They told us that she wouldn't walk and every day she defies the odds," said Vittek, "We like to prove the doctors wrong and she's really good at that."

Rachelle Bedford has a 10-year-old daughter who can't talk or walk.

"Most professionals think she won't change," said Bedford, " But she's changing all the time."

Executive Director Dr. Kris Corn founded the program over 2 decades ago.

"Horses have an incredible ability to produce the movement that you and I produce when we walk," said Corn.

She says riding leads to improvement in flexibility, balance, and muscle strength.

"The more we can actually get function from them, the less they will be dependant on the government when they get older," said Corn.

Dependance on the government hasn't been working for "Ride to Walk". The program saw its state funding dwindle to almost nothing over the past year, forcing families to pay more to ride and many out of the program altogether.

"Families who are struggling with kids who have needs need programs like this to help them and to help the whole family," said Vittek.

Dr. Corn is now looking for donations and sponsorships for the kids and the horses.

"A child should not be left in a wheelchair most of their days," said Corn.

If you want to sponsor a child or help out at Ride to Walk, you can email: hero@news10.net.

By: Anne Makovec, amakovec@news10.net

A Bittersweet Day

I feel compelled to write to tell you about my day today.

This morning I heard from Gerald Weinberg, the President & CEO of the Muscular Dystrophy Association (MDA), asking our family to be on the 2009 Jerry Lewis MDA Telethon in Las Vegas. I was honored to be asked to represent so many families living with myotonic dystrophy and to be able to tell Kayla's story to help raise awareness for this disease. We have been able to share Kayla's story for the last three years in the Sacramento area broadcast of the telethon but are especially excited to be able to share her story nationally. The telethon will be aired on local stations throughout the country on September 6th and 7th, over the Labor Day weekend.

Not long after I got that news, I received a call from a grandmother of 4 month old twins who were diagnosed at birth, like Kayla, with congenital myotonic dystrophy. This grandmother had been in touch with me over the last week telling me the story of her grandbabies. They were in the NICU for 86 days after their birth. I felt an instant connection with her and was so amazed at the similarities of our stories. She reminded me a lot of my mom, better known as Grandma Jane by her 8 grandkids. The baby's father also called yesterday to talk with me about one of the twins who had gotten sick and was rushed to the hospital yesterday. The baby was sent in for exploratory surgery yesterday and not long after that, died from complications from an intestinal infection. When the grandmother called me this afternoon with this sad news, my heart broke. My heart broke for their family whose lives will never be the same after this, for the twin brother will never get to know his twin sister, for all the families living with this disease who suffer every single day but who get up and fight back and try and stay positive despite their difficult circumstances. Please keep this family in your prayers.

God Bless You Baby Zoi!

We've been on a roller coaster ride since July 2005 and I want to thank all of you for following our story and for supporting our family through this journey. I can't begin to tell you how therapeutic it has been to be able to write about our experiences. And knowing that so many people that I had never met until this experience are out there supporting us helps to ease the pain, so thank you.

Lisa

Member of the Myotonic Dystrophy Foundation Community Support Group

If you are looking for support for myotonic dystrophy or congenital myotonic dystrophy, join our online community at: www.community.myotonic.org.

Kayla Had an Accident But is OK

We had a real scare with Kayla today. I got a call this morning from one of our nurses that she fell out of one of our kitchen chairs and hit the tile floor. She seemed upset at first but then was able to calm down. It didn't seem like she was hurt until I got a call that she had thrown up about half an hour later. I raced home just in time to meet the paramedics at our house. They put her in a neck brace and rushed her down by ambulance to the ER at UC Davis.


Kayla was such a trooper and didn't complain that much about being locked down for most of the day. We entertained her and tried to keep her spirits up. She is such a good little girl.

The doctors did a CT scan and several X-Ray's and confirmed that she didn't have any damage from the fall. We were so relieved until the doctor mentioned that she had brain stem and frontal lobe atrophy consistent with congenital myotonic dystrophy. That was a punch in the gut that I wasn't expecting. I know that it's a reality of this darn disease but to hear the doctor say those words about my angel Kayla, really took my breath away. I cried on the ride home but then got through it and I'm ok now. I know that I can't focus on that right now as Kayla has done more than anyone expected her to so we feel very blessed that she is even here with us. I really believe that an angel scooped in to save Kayla from that fall. When I got home I saw how she fell and I realized what a miracle it was that she's ok.

Feeling blessed,

Lisa