"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)

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

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)

Kayla Met Her Favorite American Idol, David Archuleta, Backstage After His Concert Tonight

Tonight was a night that we will never forget. Kayla was invited to go backstage and meet her all-time favorite American Idol, David Archuleta, tonight. This wonderful woman, Monica, heard that Kayla loves David Archuleta and she wrote to me and offered to try and have Kayla meet him at his concert in Santa Rosa, California. The show was really great and Kayla had a blast. After the show, we went backstage and David came over to meet us. Kayla was a little shy but after we left the concert, she kept giggling and saying and signing "David". This was a once in a lifetime experience for her.

Monica, thank you so much for reaching out to me and setting up this meeting. Kayla has been through so much in her short little life and this will be an experience that will be with her forever.

David, you are such an inspiration! You have the voice and spirit of an angel. You have no idea how much this meant to our family but especially to Kayla. She wakes up every morning and signs and says your name until I turn on my iPod and play your music. She's your #1 fan! THANK YOU, THANK YOU, THANK YOU from the bottom of my heart!

Lisa
www.cureforkayla.com

No Turkey Today But Feeling More Thankful Than Ever On This Thanksgiving Day

Well, I've been working a lot lately as running a non-profit means doing fund raising campaigns during the holidays. Well, I got so busy yesterday stuffing and fluffing envelopes that I forgot to pick up our free range turkey that I ordered 2 weeks ago and the grocery store is closed today. My entire family arrived yesterday for Thanksgiving at my house and we don't have a turkey. When I realized my mistake this morning, I started to get frustrated so of course what did I do but go to Facebook. The first post I saw was my new friend Jeni Stepanek (@jenistepanek) who posted a poem written by her late son Mattie. It put my frustration into perspective and helped me to stop and remember all the things I'm thankful for today.

Here is Mattie's poem:

"If you have enough breath to complain about anything, you have more than enough reason to give thanks about something." - Mattie (page 88 MESSENGER book - www.mattieonline.com).

Here is a blurb from Mattie's website:

"Mattie also feels very blessed just to be alive at age 13. Children born with his disease do not usually live very long. Mattie knows that each day is a gift, and he makes the most of it. He says he gets his strength from God and his mom, and also from the people that become part of his circle of life. "People tell me I inspire them. And that inspires me. It's a beautiful circle, and we all go around together, with and for each other. What a gift," says Mattie."

Mattie died just before his 14th birthday. Well, if that doesn't stop to make us all remember our blessings in life, I don't know what will.

I am so thankful that I've had another year with our sweet baby Kayla. Here is a photo of her from our first Thanksgiving in 2005. She had been home from the hospital for only 2 weeks at the age of 4 months old. This was our first trip with Kayla to the first floor of our house. Kayla was still on a ventilator and being fed by a feeding tube at this point. The other photo is Kayla with my brother Chris and sister-in-law Dawn who came to visit Kayla for the first time on November 24, 2005.





Today I am thankful for all of the incredible people that have crossed my path throughout my life and especially for all of the people that have been there for us since Kayla's traumatic birth in 2005. I feel so blessed to have so many incredible people supporting me and enriching my life. I feel blessed to have the best family ever. We have been through so much together, including the suicide of my brother Steve in 1986, the tragic death of my adopted brother, Jim Kim, who was run over by a car while walking down a country road. Jim died less than 9 months after my brother Steve died. Having a strong supportive family has made these experiences bearable.

I am thankful for having a sister-in-law, Dawn, who is not only a great addition to the family but also a good friend. I am thankful for my 7 nieces and nephews, Danny, Katie, Brennan, Logan, Andie Lee, Noelle and Maya. They enrich my life and make me appreciate the small things.

I am thankful for all of the friends I have made throughout my life while living in Tokyo, Japan, Englewood, New Jersey, San Diego, California, Silver Spring, Maryland, Washington D.C., Richmond, Kentucky, Auburn, Alabama (WAR EAGLE), Atlanta, Georgia, Glendale, Arizona and San Jose, Campbell, Santa Cruz and now finally in Rocklin, California. I am thankful for sites like Facebook that have brought so many of you back into my life.

I am also thankful that I have found a career that is more fulfilling than anything that I could have ever dreamed up. On this journey, I have met some of the most brave and inspiring people in the world. One recent addition to this list of inspiring people is Rick Guidotti of Positive Exposure. See for yourself: www.positiveexposure.org

I have made new friends and lost too many friends to this disorder already and watched so many families have their hearts broken but they still get up every day and face their own challenges and struggles with bravery and courage. Here are a few of my new friends: www.positiveexposure.org/myotonic.html I get calls all the time now from families who's kids are diagnosed at birth and are many times still in the ICU. Being able to help them at a time like that is something that is so healing and helpful to me too. I have friends who are fighthing for their lives. Ed and Alice, our hearts are with you at this difficult time. Thank you for blessing all of our lives.

I am thankful for my own good health so far so that I can be there to take care of Kayla.

I am thankful for all of you who follow our journey and whether we talk everyday or once a year, I know you are there for us.

Feeling blessed on this Thanksgiving Day!

Lisa

The Vittek Family on the 2009 MDA Jerry Lewis National Telethon

I have been promising to post the videos from our telethon appearances at the Las Vegas Muscular Dystrophy Association (MDA) National Telethon this summer and I finally received files that I can post. For those of you who didn't already know, Jeff, Kayla and I were asked to be one of the 4 families telling our story on the National telethon this year. Over the last 3 years we have been on our local broadcast of the telethon in Sacramento but this year we were able to tell our story nationally. It was such an incredible experience for all of us. We were able to meet all kinds of interesting people including Wynonna Judd, Jann Carl from Entertainment Tonight and our host, Nancy O'Dell from Access Hollywood. We also met Maureen McGovern, Ace Young, Bo Bice, The Fab Four, Brandon Barash from General Hospital, Five For Fighting, Richard Bowser (who was flirting with Kayla), Billy Gillman and many more. They were some of the most down to earth people I've ever met.


What the telethon means to me?


Lisa's Interview and Kayla's Story


Jeff's Interview and Kayla's Story

"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

Kayla's Debut on National TV for the MDA Jerry Lewis Telethon This Weekend

Dear Friends,

So much has happened in the last month and I keep thinking about blogging but just haven't been able to find the time. Well, this weekend I have something big to blog about. Our family has been incredibly blessed to be selected as one of four families who will share their story with the country on the National MDA Jerry Lewis telethon in Las Vegas this Labor Day weekend. We feel a great responsibility in sharing Kayla's story as it represents so many brave families across the world living with myotonic dystrophy. Our family has watched the telethon since I was a young girl and never in our lives imagined that we would be one of those families fighting for our lives. The MDA has been such an amazing help over the years and they connected us with so many wonderful resources and allowed Kayla to have the best medical care for kids living with neuromuscular diseases. I hope that you can all watch and support the MDA who does so much for families living with myotonic dystrophy and the 43+ neuromuscular diseases the MDA supports. Here are some of the highlights from the past month and a schedule of our appearances.

Kayla in the News:

In June, the TV production team from the MDA decended upon our family for two fun filled days of filming. Our local TV station came to film the shoot: http://www.kcra.com/video/19782597/index.html

In the July-September issue of Quest Magazine, the four families who will be on the National telethon were featured in a story about the telethon: http://www.mda.org/publications/Quest/q163telethon.html

Tomorrow morning, Friday, September 4rd through the 6th, our family will be on the MDA homepage: http://www.mda.org/, talking about what the telethon will mean to us. The schedule has changed a couple of times already so hopefully we are still scheduled for those dates.

And then this weekend we will share Kayla's story and be interviewed live on the telethon. The current schedule for our appearances is:

Sunday, September 6 – Hour 2 – 6:55 - 7:45 p.m. Pacific

Monday, September 7 – Hour 19 – 12:30 - 1:20 p.m. Pacific


Find your local TV station that will be airing the telethon in your area.



Watch the highlights from the 2008 telethon. It's worth 10 minutes of your time so please take a few minutes to watch it.

Please come out and support the MDA this weekend and help to end these devastating neuromuscular diseases for good. Every dollar counts so please do what you can to help.

With Love and Hope,

Lisa

In Loving Memory of Kim Dae-jung, Former President of South Korea

My heart is heavy tonight after hearing about the loss of a dear family friend, Former President Kim Dae-jung: http://www.cnn.com/2009/WORLD/asiapcf/08/18/skorea.kim.obit/index.html. Life has been so busy lately that I didn't even know that he was hospitalized with pneumonia for the last month. It makes me realize how fast we all move and how fleeting life can be. It really makes me want to slow down, take a deep breathe and appreciate all the blessings in my life. The last time I saw President and Mrs. Kim was when I was pregnant with Kayla and they were visiting San Francisco and met with our family in their hotel suite. It was such an honor to know this extraordinary family who gave their lives in service to the Korean people and the world for so many years.

My parents have known the Kim Family for over 50 years now. My mother graduated with Mrs. Kim, Lee Hee Ho, from Scarritt College in Nashville, TN in 1958 and they have been friends since their college days together. My father headed the North American Coalition for Human Rights in Korea in the 70's and 80's and was a colleague of President Kim during that time. When I was in my freshmen year of college in 1985, I remember watching the news one evening in our dorm lobby and there was my father being crushed by the crowd of Korean police who had met the Kim's plane as they returned to South Korea. It's a memory that I will never forget.

President Kim went on to serve as president of the Republic of Korea from 1998 to 2003, and in 2000, he won the Nobel Peace Prize for fostering better relations between North and South Korea. http://nobelprize.org/nobel_prizes/peace/laureates/2000/dae-jung-bio.html

When Jeff and I announced our wedding to our family and friends in 2003, I received a wedding gift from the Kim family that I will treasure forever. They sent me a replica of President Kim's Nobel Peace Prize and the following letter. I pulled the letter out tonight to read it and remember this great man.

"July 25, 2003

Dearest Lisa,

I just read your wedding invitation with great pleasure. I sincerely congratulate you on your upcoming wedding in August. Your father is a wonderful man who was a great help to me as well as Korean people when we struggled during hard times for Korea's democracy and human rights. I hope you follow in the footsteps of your father and hope that in your marriage, you and your husband will continue to pray for people in need around the world. I wish you a lifetime of happiness and may God bless you and your future husband.

Sincerely,

Kim Dae-jung
Former President of the Republic of Korea"


Thank you President and Mrs. Kim for enriching my life and for all you have done for people around the world. Condolences to your family tonight as you grieve and celebrate the life of such an extraordinary man.

With Love and Respect,

Lisa Vittek

Welcome to Holland

As many of you know, I manage the Myotonic Dystrophy Foundation, a patient advocacy group focused on education, advocacy and research for myotonic dystrophy. I was recently invited to speak at a medical conference in Holland, in a small town called Naarden not far from Amsterdam. Just before I left for my trip I received a call from my brother saying that he had just returned from a romantic trip to Italy with his wife Dawn. I had to laugh because there is a famous poem by Emily Perl Kingsley that talks about the experience of having a child with a disability and in the poem it talks about how your lifelong trip to Italy gets re-routed to Holland. This poem was passed on to me by another mom who has a child with congenital myotonic dystrophy when I was in the hospital with Kayla. I remember the impact this poem had on me around Kayla's birth and still has on me to this day. When people ask me what it's like to have a child with a disability, I usually just send them a copy of this poem. I wanted to share it with you.

"Welcome to Holland” by Emily Perl Kingsley c1987

When you're going to have a baby, it's like planning a fabulous vacation trip to Italy. You buy a bunch of guide books and make your wonderful plans... the Coliseum, the Sistine Chapel, Gondolas. You may learn some handy phrases in Italian. It's all very exciting. After several months of eager anticipation, the day finally arrives. You pack your bags and off you go.

Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland!" "Holland?" you say. "What do you mean, Holland? I signed up for Italy. I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place full of pestilence, famine, and disease. It's just a different place. So, you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around. You begin to notice that Holland has windmills. Holland has tulips. And Holland even has Rembrandts. But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life you will say, " Yes, that's where I was supposed to go. That's what I had planned." And the pain of that experience will never, ever, ever, go away. The loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

I have to say that both my trips to Holland (one virtually and the other one that was real) were both life changing. Even though we've been through so much with Kayla I wouldn't give up my "trip to Holland" for anything in the world. I love my daughter more than anything. My second "real" trip to Holland made me realize how many talented, brilliant minds are focusing on this disease. I met with many passionate researchers who are working hard to try and make a difference. I left the meeting feeling more hopeful than ever that treatments for myotonic dystrophy will be found in the next 5-10 years. Thank you to the medical and scientific community focusing on finding cures or treatments for this disease. We are grateful to you!

On another note, we are having a nice 4th of July weekend and had a fun day yesterday BBQing by our pool with good friends. We had at least 30 people here so I'm a little exhausted from cooking all day but we had a blast. I had a special treat; an old girlfriend of mine stopped by with her new baby and she brought lots of her nieces and nephews along. My friend and former college teammate, Ruthie Bolton, is incredibly talented and is not only a professional basketball player (who played for the Sacramento Monarchs) but is also a two time gold medalist in basketball. Well, besides her athletic skills, she also is a talented singer. In fact, she is one of 20 kids and most of her siblings can sing too. Signing is definitely in the Bolton genes. Well, we were blessed to have Ruthie and her family sing the most beautiful version of "Happy Birthday" to Kayla that I've ever heard. They also sang "Amazing Grace" which was also incredible and of course, made me cry. Moments like that make me realize how important it is to stay connected to friends and continue to live life as we did before the diagnosis of myotonic dystrophy in our family. THANKS RUTHIE for making Kayla's birthday so special!