Hearts 4 Kyra

A little girl's courageous battle with juvenile dermatomyositis

Blog

view:  full / summary

Happy Halloween

Posted by hearts4kyra on November 7, 2009 at 1:04 AM Comments comments (0)

Saturday October 31, 2009

Kyra was so excited to go trick or treating on Halloween Night.  We are so thankful for her recovery and amazing progress.  She wanted to walk all night long.  What a little trooper.

Eight is Enough?

Posted by hearts4kyra on November 7, 2009 at 12:39 AM Comments comments (0)

Thursday October 22, 2009

 

Today Kyra started up with p/t again.  HMSA finally agreed to more therapy for Kyra.  However, they only agreed to 8 more sessions.  We have to fight for more, but for now eight will have to do. 

HMSA DENIES KYRA OF THERAPY

Posted by hearts4kyra on October 17, 2009 at 1:27 AM Comments comments (14)

Friday October 16, 2009

It's offical...Kyra has been denied any more therapy sessions by HMSA.  The reason that was given to us was that they (HMSA) felt that Kyra had made so much progress that therapy was no longer necessary.  BS!  She has made tremendous progress considering that it was only 3 months ago that she was unable to even bear any weight.  Now she is able to get around on her own by walking.  Although her walking is still very stiff, almost a side to side shuffle.  She cannot run at this time.  She cannot jump at this time.  She has a hard time to climb up an incline.  She takes it one step at a time when it comes to stairs.  But that is how a normal 5 year old would do things, RIGHT?  That is if HMSA has anything to say about it.  WE WILL continue to fight this fight with HMSA...WE WILL appeal...WE WILL continue to try and do as much as we can at home with Kyra as far as therapy goes.  We already took her to a therapy session that was not covered on October 1, and we learned a lot on what we can do on our own with her.  Kapiolani Rehab Services and all of the therapists are great over there, but they know that it is beyond our means to continue to pay out of pocket for therapy.  Considering that a 15 minute session costs $61.20 (and that's after a 40% discount for out of pocket payment) Kyra normally gets therapy for 1 hour a day, 3 days a week.  You can see how quickly the money runs out when you think about it on an out-of-pocket basis, looking at it at a months time. 

There has never been a fight more courageous than the one that I have seen in Kyra's against Juvenile Dermatomyositis.  She has never backed down...never quit.  Don't think for a minute that anyone is going to deny her of getting back to normal.  THIS IS NOT OVER, IT'S JUST BEGUN!

Kyra becomes an Honorary Member

Posted by hearts4kyra on October 15, 2009 at 2:15 AM Comments comments (3)

Wednesday October 14, 2009

Kyra met Pat Ono today of the "5-0 Aloha Line Dancing Club".  The club members enjoy coming together and learning the dances as well as sharing the bond of friendship with one another.  They also are very service oriented and dedicate themselves to those causes that they feel people can benifit from their efforts the most.  So when they saw the KHNL News 8 broadcast with Kyra on the treadmill, they felt that they had found "the cause" that they were looking for. 

Kyra was named an Honorary Member of the 5-0 Line Dancing Club.  She was also given a beautiful card signed by the members, a club t-shirt, and a beautiful doll that the members felt represented Kyra the best.  "Be a friend...be inspiring...be yourself...be cool...be courageous."  All of the traits that make up this doll as well as Kyra. 

Many thanks to all of the members of the 5-0 Aloha Line Dancing Club for thinking of Kyra and taking the time to make her so happy.  We are so thankful for your thoughtfullness in choosing the "perfect" doll for her.  And thank you so much for your most generous monetary gift.  It will definately be put to good use.  Aloha all!

Click here to view a little slideshow sent to Kyra by Pat Ono.  Thanks Pat!

Kyra's Big Surprise at Jimmy Buffett's with Perry and Price

Posted by hearts4kyra on October 6, 2009 at 1:36 PM Comments comments (0)

Saturday October 3, 2009

KHNL News 8 Story as reported by Mari-Ela David

WAIKIKI (KHNL) - A little girl on Oahu who's battling an extremely rare disease got a heart-warming surprise.

A couple weeks ago, KHNL News 8 introduced you to 5-year old Kyra Furukawa of Kapolei.

Her disorder left her in such agonizing pain, she could no longer walk. On Saturday, she learned she's going to fly.

"You are going to go to Disneyland!" announced Michael Perry of The Perry and Price Saturday Morning Show Live at Jimmy Buffett's at the Ohana Waikiki Beachcomber.

It's a surprise brought on by those touched by Kyra Furukawa's courageous medical battle.

"You're going to see all the princesses you could possibly handle," said Perry.

It's a welcome getaway, spearheaded by the KSSK team once they learned Kyra is one of the Disney Princesses' biggest fans.

"She's so excited!" Kyra's mom, Tracy Furukawa said jokingly about her shy daughter's reaction to the unexpected gift to Disneyland.

After the show, the surprise family trip did begin to sink in.

"Who do you want to see in Disneyland?"

"Cinderella," said Kyra softly.

"Why Cinderella?"

"Because I like her," said Kyra.

"We're going to Disneyland!" said Kyra's mom, Tracy.

"It's like winning the lottery, this never happens," said Alan Furukawa, Kyra's dad.

KSSK brought the Furukawa's on to The Perry and Price Saturday Morning Show, after learning about Kyra's story through the Kapiolani Medical Center.

Kyra was one of the patients featured at the Kapiolani Radiothon for Kids, a 2-day broadcast on KSSK raising money for the Kapiolani Medical Center for Women & Children, a non-profit.

Kapiolani Medical Center is where the young trooper is getting treatment and physical therapy. The 5-year-old suffers from juvenile dermatomyositis, a rare condition where the immune system attacks the muscles. Symptoms first flared up in April. By May, Kyra was in such excruciating pain, she couldn't walk.

But now, this young trooper is getting back on her feet.

"She is pretty much almost back to the old Kyra that we know," said Furukawa, Kyra's mom.

And she's almost back to her normal life, which is Kyra's ultimate happiest place on earth.

The Furukawa's say Kyra may walk independently again in a couple months.

Her mom says the first thing Kyra wants to do once she's done with therapy is go back to school.

Juvenile dermatomyositis is an incurable disease that's so rare, only three children out of a million get it.

The Waiting Game: Fighting for Insurance

Posted by hearts4kyra on September 29, 2009 at 11:50 PM Comments comments (2)

Tuesday September 29, 2009

 

Today was the last p/t and o/t sessions for now.  As important as these sessions are (especially p/t), it's just not possible to do it without insurance helping to offset the costs.  So the wait begins as the insurance company takes a look at all of the reports from the therapists along with Kyra's doctors to see if she "needs" more.  We have learned some of the things that we can do with Kyra for now while we wait and see if they will grant us more in the weeks to follow.  Sit tight and we will keep you posted on where this fight goes.

KHNL Interview with Kyra

Posted by hearts4kyra on September 22, 2009 at 3:09 AM Comments comments (3)

KHNL Interview on Monday September 21, 2009

 Imagine having a child who is in so much pain, comforting them with a hug or kiss would torture them.

Tha'ts what a brave little girl on Oahu is going through. She has a disease so rare, it affects only three children per million.

The disorder left Kyra Furukawa fighting such intense pain, it hurt to walk.

But she's shown so much spirit and courage throughout her treatments, Kapiolani Medical Center's Kids Wish Network named her September's 'Hero of the Month'.

She's taken some painful baby steps on her road to recovery. But within the past few weeks alone, Kyra has made great strides in her journey to one day walk on her own again. The 5-year-old can now take short strolls without much help.

"That is to us, it's miraculous. To us she's a miracle," said her father, Alan Furukawa.

Kyra suffers from juvenile dermatomyositis, a condition where the body's immune system attacks the muscles and causes severe inflammation.

"It was very hard to see her in pain. I would pray to God that he would give me the juvenile dermatositis and that way she would be healthy," said Kyra's mother, Tracy Marie Leilani Furukawa.

At Kapiolani Medical Center where Kyra has physical therapy twice a week, the little trooper has spent the past month trying to conquer this rare disease that has no cure, one that left her in such exruciating pain, within a month after symptoms flared up in April, she could no longer walk.

"You couldn't even touch her. You try to take her to the toilet or take her to the bathroom, it was sore, she would just scream in pain, it was very very hard on her," said Kyra's mom.

"She was not walking, not rolling, she couldn't even sit up in bed. She didn't even have head control," said Kyra's physical therapist, Debra Horiuchi.

But Kyra is now holding her head high. These days, her mind is not on her disorder. It's on beating her dad.

"I like to race Daddy on the treadmill," she said.

"In everything that we do, she always wants to be the winner," said Kyra's father.

And based on her progress, it appears Kyra is right on track to winning back her normal life, one brave step at a time.

"That's what really helps her progress so fast, so quickly, is that determination. I've never seen in anybody the kind of determination I've seen in her," said Kyra's dad.

Horiuchi says Kyra may walk independently again in two months.

Her parents say if it wasn't for Kapiolani Medical Center, they'd have travel to the mainland for their daughter's care.

Kyra's doctor is one of only two pediatric rheumatologists in Hawaii.

Shopping Spree

Posted by hearts4kyra on September 16, 2009 at 3:25 PM Comments comments (2)

Saturday September 12, 2009

We took Kyra to Wal-Mart today to shop for whatever she wanted.  As part of her winnings, she received a $200 gift card from the Kids Miracle Network.  She was so anxious to buy her "Cinderella" toys and accessories.  She was also generous enough to spend some of it on her sister Sierra.  Truly a hero.  We are so proud of our little princess.

A true hero

Posted by hearts4kyra on September 15, 2009 at 2:25 AM Comments comments (0)

Thursday September 10, 2009

The rehab staff at Kapiolani Hospital for Women and Children had a ceremony for Kyra today to honor her for being the Hero of the Month.  She was awarded a medal, given a "hero" T-shirt, received a certificate and was given a gift card to Wal-Mart (courtesy of the Kids Miracle Network).  Kyra was so excited to have so much attention on her accomplishments.  The biggest kick for her was when Tucker, the rehab dog came in and "hung out".

    Congratulations Kyra!                                                                              Tucker and Kyra

"Look Mom, no NG tube!"

Posted by hearts4kyra on September 7, 2009 at 2:20 PM Comments comments (3)

Saturday September 5, 2009

Finally after 8 weeks of having it in, we were finally given the green light to remove her NG feeding tube.  We will monitor her daily intake and report anything out of the ordinary.  Kyra is on her way to recovery.


Rss_feed