Kyra fell down at school today and as a result got a buckle fracture. Thanks to the awesome team at Shriner's Hospital for all their help.
It's 2011 and we're off to a great year! Kyra recently stopped her steroid medication and the doctors are amazed at how well she is doing. Check out some of the latest pictures.
On July 16, 2010 Kyra was invited to Hickam AFB on O'ahu by the 535 Airlift Squadron to be a "Pilot for a Day". This program is a collaborative effort between the Kapiolani Medical Center for Women and Children's Rehabilitation Occupational Therapy Department and the Air Force. Kyra was very fortunate to be nominated for this honor and had the time of her life. Read more in the latest blog and don't forget to check out the pictures. Mahalo. (Updated on July 19, 2010)
Read about Kyra's exciting day at Hickam AFB in this newspaper article that was posted online here. Also keep voting for the Pepsi Refresh Challenge all through August because Cure JM has moved up to 4th place.
As you already know, Kyra suffers from a very rare disease that has no cure. The Cure JM Foundation is the only one in the country that is geared specifically to finding a cure for Juvenile Dermatomyositis. The only way to make this possible is through research grants and funding. The Pepsi Company is offering a tremendous opportunity by putting up $250,000 to the foundation that receives the most votes by the end of July. Please go to the latest blog to read on how to help the Cure JM Foundation, and help Kyra as well or click on the widget below to cast your vote now. Mahalo.
(Posted on July 5, 2010)
As you know, JM (Juvenile Myositis) is an orphan disease, less then 17,000 kids in the country have it and anything with less than 200,000 cases is considered an orphan disease. In Kyra's case, she has JDM which is a sub-category of JM, which means even fewer kids have what Kyra has. Securing funding for research for such orphan diseases is virtually impossible if not for friends who gereously give. This grant which Pepsi is "putting up for grabs" is a treasure for anyone who can get it. Please help by casting your vote for Cure JM, everyday till the end of the month. You can only vote once, but again anyone 13 and older in your household can vote. Click here to get you started on helping a tremendous cause and help Make Myositis a Memory!
After a busy 2 days of Disneyland and California Adventure Park, we are so happy to be home. We rode so many rides, saw the fireworks and parades, and closed down the parks on both nights. It was awesome! Kyra drove at the Autopia, rode Dumbo the Flying Elephant, and sang "It's a Small World" just for starters. It was such a blessing to see her so happy. We are so thankful to everyone for such an amazing and generous gift. See all of the pictures from the Magic Kingdom by clicking on the "Photo" icon. (Updated on 5/2/2010).
On the eve of the signing of the Health Care Reform Bill, Mari-Ela David of Hawaii News Now sat down with us to discuss how this bill could help kids with pre-exsisting medical conditions like Kyra. Click on the "VIDEO" tab to view this interview I call "Hope with Help". (Updated on 3/30/2010)
[Photo of Darin and Mari-Ela of Hawaii News Now with Kyra]
Although the video sources are no longer available on the internet, watch the interviews that brought Kyra's story into your home on KHNL. Go to the "VIDEOS" tab and check it out. (Update 3/6/2010)
When Kyra was asked what she would give up for Lent she took a moment to think about it. Then she said," It has to be something that I love, right? Ok, I will give up learning...I won't do any homework until Easter because I love it so much!" We came to an agreement and she will continue to learn and do homework, but until Easter she has given up M&M's. What a cute girl. (Updated 3/6/2010)
The final approval has been given by Kyra's doctors to visit the Magic Kingdom. We will be leaving for our Disney adventure on April 28 and returning on May 1. Check back to view all of the pictures and tune in to the morning show with Perry and Price on KSSK on April 29 and 30th as we will try and contact them live from the Magic Kingdom when Kyra visits with Cinderella and her friends. (updated on 3/6/2010)
Kyra started her first day of Kindergarten at Our Savior Lutheran School on January 4, 2010. Congratulations Kyra! She has come such a long way.
Read the latest blog about the Christmas party we had with the Aloha 5-0 Line Dancing Club and view the photos in the "Photo Gallery". (Updated on 1/5/2010)
Check out the latest pictures of Kyra's Dolphin Adventure at Sea Life Park in the "Photo" section and "Blog". (Posted 1/04/2010)
Kyra, Mom and Sierra ride aboard the Target Sleigh in the Kapolei Light Parade on Saturday Night.
On Sunday November 8, 2009 Kyra had a special lunch with Jamie and her family at Anna Millers in Pearl Ridge. Jamie is a little girl that like Kyra suffers from Juvenile Dermatomyositis. It was very touching to see these two brave little souls laugh and enjoy each others company. To learn more about Jamie, view her website here.
Kyra gets denied by HMSA of any medical insurance coverage with her therapy.
The KSSK Radio team invited Kyra and family to the Saturday Morning Show at Jimmy Buffett's to surprise them with a trip to Disneyland. See the latest blog and video. A very big "MAHALO" to Michael W. Perry, Larry Price, Sweetie Pacarro, Christine Yasuma, Kathy "With A K" and the entire KSSK Team for all of their support with Kyra's special story. A very special "Thank You" to videojournalist Ed Matthews and Mari-Ela David as well as the entire KHNL News 8 team for taking the time to share Kyra's courageous story with the world.
To our family and friends in Switzerland, you can now view this website in either French or Italian by simply going to the bottom of this page and clicking on the translator button.
Gary was only 2 years old when he was diagnosed with Juvenile Dermatomyositis back in May 2009. View his story here as he courageously battles this terrible disease.