TO JOE: I'M ASKING YOU FIRST.....

General discussion regarding Kawasaki disease
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DanielleJ
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Joined: Thu Dec 04, 2014 3:36 am

TO JOE: I'M ASKING YOU FIRST.....

Post by DanielleJ » Sun Dec 07, 2014 4:48 am

Joe,
It seems that you are the one posting most of these, if you go into the discussion forum, look under mine, The Nightmare we share, and you'll see mine. That is only part of my story. My nightmare is far from over... But 1. Why is it when our children are diagnosed with this disease with as little as is known about this disease we are given no questionnaires, no numbers, no genetic testing kits, with nothing known, why are no doctors or researchers requesting information from the families and parents of children's with this disease so you can study and refer to each one and see if there are any correlations? How can you research a disease if you can't compare any factors?
2. Why is there no material on this subject?
I have already had one child die, unknown... SIDS Now my second daughter has come close over and over she has two more heart exams in next 3 weeks, and probably the rest of her life. I will not suffer this nightmare alone I cannot. I have bills I cannot pay from laying by her bedside....
I am starting with the local media, papers, churches radio stations, after these heart exams are done, I need help financially so badly right now because of all this, and we are alone, and I suffer alone with my two children praying for her health and life, and praying I can keep us going now.
After her exams I will go as far as a I can so we can get what we need to get more material to study even if it requires emailing and locating every single parent who had a child with Kawasakis disease and getting them to offer history, DNA, information what ever it takes, so maybe somehow this disease that is unknown becomes known enough so that when our children lie cradled in our arms and we can do nothing but hold them and cry and pray, that we can at least try to feel like we are doing something. Alana's Mom God help us..... javensd@my.lowercolumbia.edu

Nancy
KD Forum Leader
Posts: 666
Joined: Mon Apr 25, 2005 6:49 am

Re: TO JOE: I'M ASKING YOU FIRST.....

Post by Nancy » Sun Dec 07, 2014 7:51 pm

hi

Research takes money....and rare diseases struggle to get funding for research.
Unfortunately, it may be as simple as that....parents care, the docs care, but at the research level, KD is a very
small segment of the "pie".

Jane Burns MD at UCSD, Jane Newburger MD at Boston Children's, Anne Rowley MD at Northwestern and Brian McCrindle at Sick Children's (Toronto) are among those who have devoted much of their careers to learning more about KD and hopefully the cause of it. But, lack of funding limits their efforts and the efforts of other researchers.

See https://www.pediatrics.ucsd.edu/researc ... fault.aspx

See also the Kawasaki Disease Foundation at http://kdfoundation.org/

best,
nancy

DanielleJ
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Posts: 7
Joined: Thu Dec 04, 2014 3:36 am

Re: TO JOE: I'M ASKING YOU FIRST.....

Post by DanielleJ » Mon Dec 08, 2014 2:38 am

Nancy and Joe:
Your last response first, the link you gave me is the one I am on. Cradling my daughters body in my arms, praying for her every moment, and you as leader in the discussion forum, have you not seen us who die each day in misery when our children get a rash now, anything shows up a fever, anything at all? A small piece of the pie is research as to why a rat doesn't retain the memory of each corner of a maze properly. I have a Degree in Criminal Justice and am at the end of my Psych degree I am borderline at losing it actually because I have raised my children alone, and my education right now pays the bills. After Alana got sick recently, I haven't been able to do my work, and may lose it.. I could lose my daughter, and our electricity, we need so much.... Her next heart exam is in a week... I am starting local with Alana's story, and from there with our local media, newspapers, radio stations, and then outwards... to every mother and family who have had to stand idly by, helpless praying for the lives of our children I will get them to join me in my fight... Someone will notice, people will care, I will continue with my education and field of study and God willing hopefully find someone who cares enough to try to help us financially this month that this disease has taken out of us. We are alone, but after her story is told, I will make sure that while we face this alone, her disease becomes known and hopefully it helps the rest of us and future mothers.... Danielle Javensd@my.lowercolumbia.edu

Nancy
KD Forum Leader
Posts: 666
Joined: Mon Apr 25, 2005 6:49 am

Re: TO JOE: I'M ASKING YOU FIRST.....

Post by Nancy » Mon Dec 08, 2014 8:57 pm

hi

If you wish to get involved in raising awareness of KD, participating in a local American Heart Association "Heart Walk" is a great way ! You can form a team, pick a name and help raise awareness of KD and money for the American Heart Association ! My son had KD in 2002 and has had a Heart Walk team every year since 2003 called "Kawasaki Kids". You can find the Heart Walk nearest you on this link: http://www.heartwalk.org/site/c.flKUIeO ... 5/Home.htm

best,
Nancy

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Joe
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Re: TO JOE: I'M ASKING YOU FIRST.....

Post by Joe » Tue Dec 09, 2014 1:20 pm

Danielle,

Most of us here are either parents of kids who have/had KD or are KD survivors. Going through my son's KD was hands down the worst experience of my life.

To answer your questions: there is still so much unknown about KD. However there is a lot of work being done and a lot of good people investing energy and resources towards awareness and finding a cure. Once you are back on your feet, I encourage you to visit the KD Foundation web site (Nancy provided link above), read everything, and figure out how you can best channel your energies and get involved.

I hope your daughter makes a full and speedy recovery and you find the strength to support your kids from today forward. Know that each and every one of us here feel your pain right there with you. My sincere best wishes to you and yours.

Joe

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