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)

Sunday, November 29, 2009

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!


Thursday, November 26, 2009

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!


Thursday, November 19, 2009

The Vittek Family on the 2009 MDA Jerry Lewis National Telethon

What the telethon means to me?

Lisa's Interview and Kayla's Story

Jeff's Interview and Kayla's Story

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.

Monday, November 16, 2009

"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

Wednesday, September 2, 2009

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 Sacramento KCRA Channel 3 TV station came to film the shoot:

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,

Tuesday, August 18, 2009

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.


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

Sunday, July 5, 2009

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!

Thursday, June 18, 2009

Kayla's Story for MDA Telethon Highlighted on Local TV Station - KCRA

As you know we recently had a television crew in from the MDA corporate office in Tucson, AZ to film a story about Kayla for the 2009 MDA Jerry Lewis Telethon in Las Vegas. Our local Sacramento TV station, KCRA (Channel 3/58), who hosts the telethon in Sacramento on Labor Day, came to interview us about this event and to capture some of the filming. Here is the story that aired in Sacramento on June 14, 2009: http://www.kcra.com/video/19782597/index.html

When I know the exact time that our story will be air on Labor Day, I will be sure to post it here so you can watch and support the MDA and all of the families living with so many neuromuscular diseases.

We are so excited to be able to share our little girl with everyone and have already had several people we don't know in Sacramento come up to us to say they saw Kayla's story. I remember on the first telethon when Kayla was only 1, they told her story and I remember saying "I feel that Kayla is going change the world, one person at a time." Well, I think she's doing that. I feel so blessed to be her mom. It's a job that I treasure every single day as we don't know what Kayla's long-term prognosis is. All we can do is live in the moment and enjoy watching her grow up.

With Love and Hope,

aka: Kayla's Mom

Tuesday, June 2, 2009

Filming Our Family Story for the Jerry Lewis Telethon Today!

Well, today is a big day for us. The TV production crew for the Muscular Dystrophy Association (MDA) in Tucson, AZ, arrived in Sacramento last night and took us out to dinner at PF Changs. We had dinner with several of the producers and crew who have been doing this work for over 30 years together. Amazing! Chastity, from our local MDA office, joined us for dinner too. We had a great time getting to know them all and can't wait to begin filming today. The crew will be arriving with 7 people at our home in a few hours to begin filming for this year's National Jerry Lewis MDA telethon on Labor Day. They are here to tell Kayla's story. Our local news channel, KCRA, is bringing one of our favorite anchors, Adrienne Bankert, over at 10:00 am to also do a quick interview with us. She interviewed us when Kayla was one years old on the local portion of the telethon here in Sacramento in 2006. She is so fun and I can't wait to show her how far Kayla has come since then. Well, I had better jump into the shower so I can get ready but I thought I would keep you updated on what's going on in our lives. Never a dull moment. I'll write more about this experience later.


Monday, June 1, 2009

An Angel is Watching Over Kayla

On Friday, May 22, I started my day just like any other day the only difference is that I headed out to my new office instead of my home office. As I've mentioned before, I have been working for the last year, running the Myotonic Dystrophy Foundation out of my home. Well, we've grown so quickly over the last year that we were able to finally move to an office space. It's only about 2 1/2 miles from my home so the commute is great. I used to commute (for 4 years) down to San Jose, when I worked for eBay, which is a 145 mile commute. I'm loving the 2 1/2 mile commute.

Anyhow, I went to work and then took a quick break in the morning to go with Kayla to her 30 minute horse therapy session. I wasn't planning on going but something hit me that morning and I felt like I should be there. Well, not long after Kayla mounted the horse, Jerry, they took off around the arena with Doc at the lead. Doc is an amazing guy who has worked at this horse ranch for a long time. Kayla fell in love with him the first day she met him. He's amazing with kids and he loves his job, which is so evident from the enthusiasm and energy he puts into his work.

Well, the horse therapy is in a huge tent and the windows were rolled up since the weather has been so nice. Someone walked by the window with some sort of a cart behind them at the same time as Kayla went by on the horse and the horse, Jerry, got spooked. Jerry started bucking back and forth and Doc was trying with all of his might to pull him back down. Doc eventually got the horse down but then seconds later, he bucked up again and then took off, riping the rope out of Doc's hand leaving severe blisters on his hand. Kayla went flying backwards and landed flat on her backside of her body almost evenly from her head to her toes. I was on the side watching in horror and ran as fast as I could out to where Kayla was lying down. It felt like a slow motion movie trying to get to her. Everyone rushed in to help and we stablized Kayla and then called 911. The paramedics got her in a neck/back brace and put her on a stretcher and rushed her to the ER. Kayla was amazing and only cried for a little while although she was a little scared in the ambulance as I had to ride in the front.

Anyhow, to make this long story short, Kayla ended up having an IV put in and then had contrast dye added to her IV for a CAT scan. Kayla was so brave as she went into the tunnel. I held her hand and she layed really still. She always amazes me with how brave she is. I wonder if that were me at 3 how I would have handled the situation. Anyhow, they scanned her from her stomach to the top of her head and after about an hour and a half, the results came back that nothing was broken and that Kayla could be released.

Well, the fun doesn't end there. I headed back to work to try and catch up from the time that I was out and at 8:30 pm headed home for the night. I got home and put Kayla in the tub and then went downstairs for a quick snack before bedtime. Kayla poured water on her nightgown so Jeff pulled it off and then he and our friend David took off to drop our cars at our service center for maintenance. Moments after they left I opened the gate to go upstairs and then reached out to pick Kayla up and she slipped in water that she she spilled and landed directly on her the back of her head. The sound of her head hitting our tile was so horrible, kind of like what you would imagine would sound like if you dropped a melon. I was in total shock. I scooped Kayla up and held her in my arms on the stairs and rocked her back and forth. She kept crying which is so unusual for Kayla as she's always had a really high pain tolerance. I walked her up to her room and sat in her rocking chair trying to calm her down when I notice that my arm looked different. It was yellow, sort of like Jaundice, if you've ever seen someone with it. It was a funky yellow color. As I looked closer and lifted Kayla's head from my arm, I realized it was smeared blood and then I noticed that blood was all over my arm just below that. I trained as an EMT 10 years ago but at that moment my heart started racing and I panicked. Seeing blood coming from her head was more than I could handle. I raced downstairs with her in my arms, grabbed my keys to the car and then realized as I got outside with her that Jeff had taken our car to the dealership. I ran back in and back upstairs to grab a phone and called 911. The ambulance arrived just behind Jeff and David so as they arrived back home. Jeff and David later told me they saw the ambulance and said to each other, "it can't possibly be for Kayla". Well, they quickly realized it was for her and once again, we got Kayla strapped down, this time she was put in her car seat on the gurney and they taped her head to the car seat to keep it stable. We rushed her to the ER again. The ER was packed at this point and they dropped us in the lobby. I was a wreck but was trying to hold it together for Kayla. They took us back pretty quickly and assessed Kayla's head. On the way to the back I ran into a nurse that was still on shift from the morning. Her eyes got so big when she realized it was us AGAIN. Kayla had a huge head wound that looked more like a bullet wound than a long cut. We held Kayla down and they gave her a topical to numb the pain. Then they proceeded to put 6 staples in her head. I think we were all in shock at that point. We made it home by 1:00 am, completely exhausted.

The next morning we went downstairs for breakfast and I put Kayla directly in her high chair. I gave her some grapes, which she eats several times a week and she proceeded to inhale a grape. She looked up at me and then started drooling and trying to breath around the grape. I quickly went behind her in the high chair and did the heimlich maneuver on her twice with no success. I then ripped her out of her high chair and stood her up against me and did it again. It took a couple of seconds but then the grape shot out of her mouth. I grabbed Kayla and took her upstairs to the TV room where we have huge couches that are soft and cushy and we sat there in our pajamas for the next two days barely moving. Jeff brought us meals so we didn't have to go anywhere. I just held her and didn't want to let go. We watched video after video and just vegged together.

I know that an angel is watching out for Kayla. Within a 24 hour period, she had 3 life threatening accidents and was totally fine. In fact, Kayla acted like nothing had really happened although she did tell us several time over the weekend what happened to her. She would sign and say 'Horse', then 'Fall'. She also was signing 'Fall' then 'Hurt', then 'Head'. She is such a trooper.

Well, I need to run but I thought you might want to know how things were going.

More later.


Thursday, April 30, 2009

"Cure for Kayla" Event Tonight in Sacramento, CA to Fund a Cure for Myotonic Dystrophy


I'm getting ready for our big event tonight in Sacramento in honor of Kayla but I wanted to take a minute to say hi and thank everyone who has been supporting our family over the years. I also wanted to share a video montage I created for the event. I hope you like it.

Thank you Sacramento Community Connection, Tre Restaurant, and all of the other wonderful people who have been a part of making this event tonight a big success.

Hugs and kisses,


Friday, April 10, 2009

Join us for a networking mixer "Cure For Kayla" in Sacramento, CA to raise awareness and funds for myotonic dystrophy

Sacramento Community Connection(SCC), http://www.sac-connect.com/, a local networking group in Sacramento, CA presents "Cure For Kayla", a fundraising mixer to support the Myotonic Dystrophy Foundation, a patient advocacy group dedicated to education, advocacy and research for myotonic dystrophy, a common form of muscular dystrophy that can affect infants, children and adults. This event is in honor of Rocklin, CA’s 3 1/2 year old Kayla Vittek, who lives with congenital myotonic dystrophy, this devastating neuromuscular disease that was present at Kayla's birth. Please come and support this great cause and help so many families living with myotonic dystrophy.

Kayla’s long time nurse and family friend, David Alvis, told Kayla’s story to a friend, Kelly Grady, who runs a gift basket business called Basket Works & Beyond - http://www.basketworksandbeyond.com/. Kelly shared Kayla’s story at one of the SCC networking meetings and it struck a chord for everyone in the room. The group decided to host their annual fundraiser for 2009 in honor of Kayla. Our family is blessed to have our lives touched by so many wonderful, caring and supportive people in the Sacramento region. Thank you SCC!

To learn more about this event go to: www.sac-connect.com/April_Mixer.html or to purchase tickets, go to: http://www.cureforkayla.eventsbot.com/. The Myotonic Dystrophy Foundation needs your support!

The following local Sacramento businesses are offering special discounts on their services up until this event and will donate proceeds to the Myotonic Dystrophy Foundation. Please support these local businesses as they are a shining example of how we can all work together to make this a better world.

About: ACN provides cellular phones, ADT Home Security, Dish and Direct TV, local and long distance phone service and our new video phone. To learn more about the new video phone go to: About the Technology - http://sgt.acnrep.com/v.asp?I=11154B6D5B0D, ACN on The Celebrity Apprentice - http://sgt.acnrep.com/v.asp?I=1111456C5D0C, About the Company - http://www.6cessline.com/web/home.html.

Contact: Thomas Seifert at 916-529-4635 or by email: thomasseifert@sbcglobal.net

Offer: They are working on a charity Motorcycle ride in honor of Kayla. All proceeds will go to the Myotonic Dystrophy Foundation in honor of Kayla.

Aim High Specialties
About: Aim High Specialties is a Promotional Products Company that gives you the power and the resources to promote your business from Advertising to Vinyl Lettering

Contact: John Book at 916-213-3612 or visit his website: http://www.aimhighspecialties.com/ john@aimhighspecialties.com

Offer: Every order Till April 30th 2009, they will donate 10% of their earnings to the Myotonic Dystrophy Foundation in honor of Kayla

Attention to Detail
About: Attention to Detail is a mobile detailing unit for your vehicles.

Contact: Jon Veloria at 916-289-5946 or see his website at: www.myspace.com/attentiontodetail2

Offer: A generous portion of all sales up until the event will be donated to the Myotonic Dystrophy Foundation in honor of Kayla.

Alpha Package: HIGHSPEED WASH AND VAC $15.00-$30.00
Bravo Package: EXTERIOR HAND WASH & WAX $45.00-$65.00
Charlie Package: INTERIOR WITH SHAMPOO CARPETS $ SEATS $45.00-$65.00
Delta Package: MINI DETAIL $85.00-$100.00

Heartfelt Hands Massage
About: Heartfelt Hands Massage Therapy will help you escape from the hectic pace of life and take time for yourself. Whether you may be seeking relief from a medical condition, searching for a means to help deal with the daily stresses of life or simply wanting to maintain good health, her intention is to help you reach your goal.

Contact: Debi Gaul at 916-484-7565 or visit her website: http://www.heartfelthands.com/

Offer: Debi will be donating one hour massage gift certificate for the event and will be providing massage at the event and all gratuities will be donated to the Myotonic Dystrophy Foundation. She will also be donating a week of gratuities in honor of Kayla.

Liberty Mutual
About: Liberty Mutual provides Auto, Home, Renters, Condo, Motorcycle, Atv, Boat, Flood, Earthquake, Rental, Misc vehicle insurance, etc.

Contact: Melissa Messer at (916) 294-9518 ext. 59004 toll free 800-505-3045 ext. 59004 or by email: melissa.messer@libertymutual.com

Offer: For every quote that is completed, Liberty Mutual will donate $10 to the Myotonic Dystrophy Foundation to try and help fund a cure for Kayla! Limit one $10 donation per household. No purchase required. They will donate up to $3,000. The Liberty fundraiser runs until the April 30th SCC Mixer Event.

PAPA Contruction & Remodel Service
About: PAPA Construction & Remodel Service, Inc. is a full service remodeling company. We are licensed, insured, bonded above and beyond those required by the State of California. We work closely with the California State Licensing Board and United Contractors Association to help stop fraud and abuse with in our industry. Our work is of the highest quality.

Contact: J.A. & Emily Neeland at 916-721-4545 or 916-524-3280 or visit their website: http://www.papacontruction.com/

Offer: They will be donating 5% on Labor Charges collected to the Myotonic Dystrophy Foundation in honor of Kayla for work performed in April and May. We are also extending our April/May Special Discount of 10% on labor charges for COSTCO customers for being Business of the Month for remodel/repairs/renovations booked in the months of April and May to anyone who mentions the Cure for Kayla/ SCC Mixer.


About: SendOutCards assists people in business to stay in touch with clients and customers by sending heart felt greeting cards and postcards. In return business owners and clients build a longer, lasting relationship which in turn increases revenue by 15-20%. www.sendoutcards.com/shay click here to send a FREE card! They also assist people looking for a way to earn some additional income through our affiliate program (another reason why people in business like SendOutCards-they get paid for referring business!).

Contact: Shay Wheat at 916-339-2816 or by email: shay@millionairepartnerships.com.

Offer: They will donate 2 $25 accounts with 10 cards and 10 stamps on each account for the event. They are also looking at setting up the foundation as one of the charities to donate to via SendOutCards.

Wagner Plumbing
About: Wagner Plumbing has been providing excellent service to residential & commercial customers throughout the Sacramento area.

Contact: Jeff Wagner, Sr. at 916-481-6593 or visit his website at: http://www.wagnerplumbers.com/

Offer: An auction at the event - the winning bidder will receive installation of a brand new 1.28 gallon low flow toilet. This installation will include the toilet, wax seal and additional miscellaneous parts. The winning bidder will also get $20 dollars off the hourly rate for any additional plumbing needs that they have. They are also sponsoring the cost of the t-shirts for the SCC party. Anyone who donates $50 or more gets a “Cure For Kayla” t-shirt.

Tuesday, March 24, 2009

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.


Sunday, March 8, 2009

Kayla started horse riding therapy - also known as Hippotherapy

Kayla and I at 'Ride to Walk'

Once again, it's been way too long since I've journaled and so much has happened since my last entry. One of the best things that we have done lately is to get Kayla into a horse riding therapy program, also known as hippo therapy. We started last Friday at a local horse ranch near our home. The program is called 'Ride to Walk'. The people who run the program are amazing and so great with the kids. I wasn't sure exactly how Kayla would react to riding a horse and was so amazed to see how she handled it. She seemed a little scared at first but didn't really cry. She was whimpering a little as she went around the ring the first time and then after that she seemed to love it. There are 3 people with each rider, one to lead the horse and one at each side of the rider. One of the side walkers is her physical therapist. They do all sorts of skills as they go around the ring, including placing rings on cones, lifting stuffed animals off of polls around the ring, turning and riding backwards, putting bean bags into boards with holes in it. All of these things take core muscles to accomplish so it's quite a workout for the kids. It's not only good for core strength but also for speech. It was amazing to hear Kayla talking, telling the horse to "Walk on" and "Whoa" to make it stop. She was also naming lots of animals that they have pictures of scattered throughout the ring. It was so incredible. Of course I spent most of the time at the side of the ring with Jeff bawling my eyes out. They were tears of joy to see Kayla so independent and doing something that I know will benefit her in so many ways. It was a moment I will remember forever.

Kayla's First Time Around the Ring

Kayla's starting to get more comfortable

Kayla placing rings on a cone

Kayla's therapist (right) and walkers

Wednesday, January 28, 2009

Heavy Metal Band Auctions Grammy Medallion on eBay to Support Myotonic Dystrophy Research

If you're into Heavy Metal and want to make a difference in the lives of people living with myotonic dystrophy, bid on the lead singer of Lamb of God, Randy Blythe's Grammy medallion on eBay. Randy made this generous offer to the foundation and we are grateful to him for his support. Bidding begins at 7:00 pm PST, Wednesday, January 28, 2009 and ends at 7:00 pm PST on Saturday, February 7, 2009.

See a Video from Myotonic Dystrophy Foundation Board Member, Todd Stone