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

Tuesday, September 17, 2013

Do You Lean In?

Ok, so how have another 2 years flown by and I haven't found time to write? I have so much to say, just not enough time to put it down. In the past few years, I have been through the most painful experiences of my life but that is a story for another day and likely why I had writer's block or "never found the time to write." Well, yesterday I was inspired by a friend and I think that it reminded me how healing writing can be so this won't be the last time you'll be hearing from me this year.

Yesterday I received a call from my dear friend Carla, for whom I have had the privilege of knowing for over 20 years. Carla wrote a very powerful article that I wanted to share with you called "Do You Lean In?. If you have ever experienced tragedy or loss in your life her message will resonate with you. In her article Carla bravely revisits her experience of how she handled my daughter's birth 8 years ago. Just yesterday, I received a call from Carla apologizing to me for how she chose to show up for me during my most painful moment of my life when we were diagnosed with myotonic dystrophy eight years ago. On that call Carla and I shed a lot of tears and then she asked for my permission to write about it. There is a life lesson in here for everyone. If her message resonates with you, please share this with someone you care about and we can start a beautiful circle of healing.

The greatest gift that Kayla has taught me in life is to lean in and I'm proud of how I lean in for others during difficult times. Do you lean in?

Oh, and Carla, I forgive you and appreciate how you've leaned in and bravely written about a topic that not many people are willing to talk about. You bring so much love and beauty into my life. I love you sweetie!

Do You Lean In? By Carla de Cervantes: http://www.personalpassages.com/2013/09/do-you-lean-in/

Signing out for now...

Lisa (aka: Big Girl Kayla's Mom (Kayla says I can't call her Baby Kayla anymore)) My little girl is growing up.

Thursday, July 28, 2011

"Thank You For Kayla!"

It has been a long, long time since I've written in my blog. So many people have asked how Kayla is doing and many were worried that my lack of blogging meant that Kayla wasn't doing well. Well, my apologies for being so out of touch. Instead of writing a lengthy blog post about all of Kayla's accomplishments since December of 2009, I thought I would share this video that I took of Kayla last night as we started her birthday celebration. This video just says it all. Happy 6th Birthday Kayla. You are the most loving and special girl I could have ever wished for.
Love,
Mom

From the mouth of babes:
"I wish for all the families, and I wish for all families and I wish for all families and thank you for a happy, and thank you for all, um...oops, let's try again. I wish for all families, and thank you for this house, and thank you for all these families singing this happy birthday song. I want to see you. Thank you for this and thank you for nana and papa and thank you for David and mom and thank you for all the family. Thank you for daddy and thank you for all these daddy's and thank you for all these families." Yeah! .
"Thank you for Kayla!" (Lisa), "Thank you for this and make a wish." "And World Peace." (David) Everyone clap. Papa, make words. I want to make a wish first. Thank you for all families and thank you for all...make a wish David.
"It's Caillou, look..."
"Thank you for Caillou!" (Lisa)

Sunday, March 28, 2010

Kayla Celebrates "The Spirit of Difference"


A 6-Foot Image of Kayla Vittek Celebrating "The Spirit of Difference" with Medical Students in Doha, Qatar

Kayla continues to bring so many blessings to my life. So much has happened since I blogged last time but it would take me days to recap everything so I will share just one of the highlights.

The most magnificent thing that happened to us over the last year was meeting one of the most inspiring, funny and caring people I've ever had the pleasure to meet. Rick Guidotti, Director of POSITIVE EXPOSURE. Rick completed his education in photography and filmmaking at New York’s School of Visual Arts and established a studio in Manhattan, specializing in portraiture and fashion for 15 years. During that period he also worked in Milan, Paris and London for clients such as Yves Saint Laurent, Elle, Harpers Bazaar, Revlon, L’Oreal and Life Magazine. A few years ago he began taking photos of people living with albinism and this lead to the creation of his non-profit, Positive Exposure where he is committed to raising awareness and celebrating the lives of people living disabilities, known as "The Spirit of Difference."

Rick has been taking beautiful photos of people living with disabilities on a round the world tour to educate medical students, doctors and the general public. As you can see from the photo above, Kayla is traveling around the world in that exhibit and I feel so blessed that she can represent this community of families living with myotonic dystrophy.

If you have time, please visit the Positive Exposure website and learn more about Rick's incredibly important work.

Lisa
aka: Baby Kayla's Mom

Tuesday, December 15, 2009

How to Empower a Child with Therapeutic Horse Therapy

Kayla was recently highlighted in two videos about horse therapy. The Bay Area Equestrian Network did a story on how this therapy is beneficial to children with special needs. "How to Empower a Child"

As I've mentioned in the past, Kayla does weekly horse therapy at Ride To Walk in Lincoln, CA. Ride to Walk was also recently highlighted on Channel 10 in Sacramento. "Ride To Walk" Program Needs Some Heroes.

This therapy has helped Kayla to gain confidence, core strength and stability, and encourage her verbal expression. The California state government recently cut funding for Ride To Walk saying that this therapy is recreational. It's so much more than recreational and has helped Kayla and so many kids thrive. It is such a shame that the government has given up on supporting programs like this as they are so incredibly beneficial. Shame on you Arnold Schwarzenegger. It not only has been good for Kayla but has been good for me as a parent to be able to provide Kayla with this opportunity. Unfortunately, due to funding cuts, parents have been asked to pick up the bill and that has caused many parents to have to pull their children from the program. How are we as a country allowing cuts like this to be made as we bail out major banks and companies. It's hard for me to get my head around how these decisions are made. All kids deserve a chance to thrive and programs like horse therapy are so important for kids with special needs, especially kids with motor and speech issues.

If you love horses and helping people with special challenges, Ride To Walk is always seeking volunteers and financial support.

With Love and Hope,

Lisa (aka: Kayla's mom)