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Cure For Kayla: Our Journey with Congenital Myotonic Dystrophy

This blog is dedicated to my daughter Kayla, who was diagnosed at birth with congenital myotonic dystrophy. She spent 105 days from birth in the ICU, her first 9 months on a ventilator and using a feeding tube. The doctors did not expect her to live to see her first birthday but she is still here and keeps defying the odds, thanks to lots of love and care from her family, friends, and amazing therapists, teachers, nurses and doctors. This is her story...

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Lisa Harvey

705 G●●●●●Drive

Cap●●●ola , California, 95010

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Lisa Harvey

705 G●●●●●Drive

Cap●●●ola , California, 95010

United States

1.83●●●●1710

li●●@global.t-bird.edu

View this contact

Lisa Harvey

705 G●●●●●Drive

Cap●●●ola , California, 95010

United States

1.83●●●●1710

li●●@global.t-bird.edu

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Cure For Kayla: Our Journey with Congenital Myotonic Dystrophy | cureforkayla.com Reviews

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This blog is dedicated to my daughter Kayla, who was diagnosed at birth with congenital myotonic dystrophy. She spent 105 days from birth in the ICU, her first 9 months on a ventilator and using a feeding tube. The doctors did not expect her to live to see her first birthday but she is still here and keeps defying the odds, thanks to lots of love and care from her family, friends, and amazing therapists, teachers, nurses and doctors. This is her story...

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4 myotonic dystrophy

5 kayla vittek

6 lisa harvey

7 stanford medical school

8 stanford

9 hope

10 md care

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Cure For Kayla: Our Journey with Congenital Myotonic Dystrophy | cureforkayla.com Reviews

https://cureforkayla.com

This blog is dedicated to my daughter Kayla, who was diagnosed at birth with congenital myotonic dystrophy. She spent 105 days from birth in the ICU, her first 9 months on a ventilator and using a feeding tube. The doctors did not expect her to live to see her first birthday but she is still here and keeps defying the odds, thanks to lots of love and care from her family, friends, and amazing therapists, teachers, nurses and doctors. This is her story...

INTERNAL PAGES

cureforkayla.com

1

Cure For Kayla: Our Journey with Congenital Myotonic Dystrophy: March 2010

http://www.cureforkayla.com/2010_03_01_archive.html

Cure For Kayla: Our Journey with Congenital Myotonic Dystrophy. 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. If you have time, please visit the Positive Exposure. Aka: Baby Kayla's Mom.

2

Cure For Kayla: Our Journey with Congenital Myotonic Dystrophy: Kayla Vittek's Story on 2009 MDA Telethon

http://www.cureforkayla.com/2017/01/kayla-vitteks-story-on-2009-mda-telethon.html

Cure For Kayla: Our Journey with Congenital Myotonic Dystrophy. Wednesday, January 18, 2017. Kayla Vittek's Story on 2009 MDA Telethon. Posted by Kayla's Mom. Labels: Congenital Myotonic Dystrophy. Subscribe to: Post Comments (Atom). Photos and VIdeos of Kayla. Kayla Vitteks Story on 2009 MDA Telethon. Myotonic Dystrophy Information and Support. Myotonic Dystrophy Foundation - Community Support. July 28, 2016. 78 lbs. 5 ft. 2 in. Kayla is growing up so quickly and is definitely turning into a tween.

3

Cure For Kayla: Our Journey with Congenital Myotonic Dystrophy: Kayla Celebrates "The Spirit of Difference"

http://www.cureforkayla.com/2012/06/kayla-celebrates-spirit-of-difference.html

Cure For Kayla: Our Journey with Congenital Myotonic Dystrophy. 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. If you have time, please visit the Positive Exposure. Aka: Baby Kayla's Mom.

4

Cure For Kayla: Our Journey with Congenital Myotonic Dystrophy: October 2013

http://www.cureforkayla.com/2013_10_01_archive.html

Cure For Kayla: Our Journey with Congenital Myotonic Dystrophy. 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. Posted by Kayla's Mom. Links to this post. Subscribe to: Posts (Atom). Photos and VIdeos of Kayla. Kayla is making an impact. Myotonic Dystrophy Information and Support. July 28, 2016. July 28, 2015.

5

Cure For Kayla: Our Journey with Congenital Myotonic Dystrophy: June 2014

http://www.cureforkayla.com/2014_06_01_archive.html

Cure For Kayla: Our Journey with Congenital Myotonic Dystrophy. 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. Links to this post.

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fauxmartha.blogspot.com

Just Be: February 2013

http://fauxmartha.blogspot.com/2013_02_01_archive.html

Sunday, February 24, 2013. I love you dear daughter to the moon and back several 100 times. I love every inch of you. I love your giggle, your singing of the "Star Spangled Banner" every night. I love your silliness. I love your crazy stories. I love your career choices. I love you so much. PS MOM.check out this little cart. My popsicle stand? Links to this post. Friday, February 8, 2013. See you in June! PS Once again sorry about the F-bomb. Links to this post. Sorry that the video is also a tad bit off...

fauxmartha.blogspot.com

Just Be: I love this so immensely.

http://fauxmartha.blogspot.com/2013/05/i-love-this-so-immensely.html

Wednesday, May 1, 2013. I love this so immensely. Subscribe to: Post Comments (Atom). I love this so immensely. Groups that could really use your support. Center for Biological Diversity. West Suburban Teen Clinic in Excelsior. My Favorite Etsy Shops and Websites. Live Savvy Head Bands- A Mpls Company. A Life Less Ordinary Cards. Maebrilliant wall collages.so yummy. Bands You Just Don't Want To Miss. Black Cab Sessions-SOOO Awesome! Priscilla Ahn singing Dream. Matt Jennings (muy bonita). The Pioneer Wom...

fauxmartha.blogspot.com

Just Be: April 2012

http://fauxmartha.blogspot.com/2012_04_01_archive.html

Monday, April 30, 2012. Some favorite quotes of recent. Links to this post. Thursday, April 26, 2012. So we are at the ackward teenage stage. Of chicken keeping. Still kind of cute, but a tad ugly. Feathers starting to poke out, combs making an appearance. Links to this post. Monday, April 23, 2012. Links to this post. Wednesday, April 18, 2012. I dare not say it but.IT IS THE BEST BOOK I HAVE READ IN YEARS! Nowjust prior to this book I read "The Condition" by Jennifer Haigh.a more serious book but s...

fauxmartha.blogspot.com

Just Be: March 2012

http://fauxmartha.blogspot.com/2012_03_01_archive.html

Monday, March 26, 2012. I entered the Epiphanie Camera Bags. Picture It photo contest. http:/ bit.ly/xN3Pqc. Links to this post. Friday, March 23, 2012. The garden of mystery and wonder. We moved in last fall and everything was already cut back. There are some things that were well taken care of and others that were not. I am going to learn a lot but in the end, I am SOOOO EXCITED to see what comes up. What do you think is planted in here? What should I plant in the holes that remain? Links to this post.

fauxmartha.blogspot.com

Just Be: May 2013

http://fauxmartha.blogspot.com/2013_05_01_archive.html

Wednesday, May 1, 2013. I love this so immensely. Links to this post. Subscribe to: Posts (Atom). I love this so immensely. Groups that could really use your support. Center for Biological Diversity. West Suburban Teen Clinic in Excelsior. My Favorite Etsy Shops and Websites. Live Savvy Head Bands- A Mpls Company. A Life Less Ordinary Cards. Maebrilliant wall collages.so yummy. Bands You Just Don't Want To Miss. Black Cab Sessions-SOOO Awesome! Priscilla Ahn singing Dream. Matt Jennings (muy bonita).

fauxmartha.blogspot.com

Just Be: October 2012

http://fauxmartha.blogspot.com/2012_10_01_archive.html

Thursday, October 25, 2012. I have a thing for Willie Nelson? This week has just been extraordinary. Just trying to keep a level head, breathe, plow through, raise money for MDA, be glad I have healthy children and an understanding husband and thankful I have found a hobby that might actually do some good. It is amazing what you can see from behind a camera lens. Albeit I hold back tears a lot and sometimes they don't stay in very well. Links to this post. Wednesday, October 17, 2012. Links to this post.

fauxmartha.blogspot.com

Just Be: August 2012

http://fauxmartha.blogspot.com/2012_08_01_archive.html

Saturday, August 25, 2012. Apostle Islands, Lake Superior. Links to this post. Thursday, August 9, 2012. 1)Yoga.it is my church (thanks Stephanie). 2)Mark John Nelson "Reminisce". 4)Premade/Uncooked tortillas (from Costco).which sadly aren't there anymore (ya hear that Costco? Can we get them back? 5)The garden.ahhh tomatoes, how I love thee, especially with some mozzarella. 6)Trying to replace bad things with good things. 7)Black short boots. Yep, I am loving them. 9)My brother. Love that guy. Allison K...

fauxmartha.blogspot.com

Just Be: January 2013

http://fauxmartha.blogspot.com/2013_01_01_archive.html

Sunday, January 13, 2013. Links to this post. Friday, January 4, 2013. Do you live your life with no regrets? When this life comes to a close and you are reflecting back on the time that was given to you to live it, will you have any regrets? Do you wish you had done things differently? Or do you wish you had spent more time with people that you enjoying spending time with? What would you trade a few hours of t.v or internet time for? What are you wishing you had done by now and haven't done? Sometimes c...

fauxmartha.blogspot.com

Just Be: September 2012

http://fauxmartha.blogspot.com/2012_09_01_archive.html

Thursday, September 27, 2012. Just blurting this out. Nothing is sacred anymore, is it? We have to go in, tear up, destroy, make new, plasticize, disintegrate and THINK LATER. Everyday I get a notice about all of the FDA food recalls and let me tell, there are sometimes 3 per day. (Should you like to get on that list, it can be found here. Since 9/24, there have been 10 recalls, in 3 days.) Yes, we need to eat but what are we doing? We are using reclaimed sewage water to ski on. So we can SKI! I had the ...

fauxmartha.blogspot.com

Just Be: April 2013

http://fauxmartha.blogspot.com/2013_04_01_archive.html

Monday, April 22, 2013. Ahhhhh, the wayside, that is what it looks like. As always, here are some views from this crazy good life, in somewhat chronological order:. Links to this post. Subscribe to: Posts (Atom). Ahhhhh, the wayside, that is what it looks like. Groups that could really use your support. Center for Biological Diversity. West Suburban Teen Clinic in Excelsior. My Favorite Etsy Shops and Websites. Live Savvy Head Bands- A Mpls Company. A Life Less Ordinary Cards. Priscilla Ahn singing Dream.

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Cure For Kayla: Our Journey with Congenital Myotonic Dystrophy. Wednesday, January 18, 2017. Kayla Vittek's Story on 2009 MDA Telethon. Posted by Kayla's Mom. Links to this post. Labels: Congenital Myotonic Dystrophy. Saturday, September 12, 2015. New Beginnings - A Day To Remember. Our Wedding Day - September 12, 2015. I think she has longed for me to settle down for a long time. It was truly a magical day to remember and a great start to our new life together. Posted by Kayla's Mom. Links to this post.

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