Hope

We have hope.
Hope for peace.. we Have peace because we have hope.
When the world is insane and troubles over come us.. i lift up the worries to God..
and When all is well and good. I lift up praise for all his Blessings!
So I rest easy in that HOPE

and hope for a treatment for JHD
http://www.pbs.org/wgbh/nova/body/rnai-cure.html

http://www.wehaveaface.org/Help4HD.html

Psalm 119:114
Thou art my hiding place and my shield: I hope in thy word.

a bit over whelmed today.. but God will hold us.

Kate's Kronies: it 4 am ...

Kate's Kronies: it 4 am ...

it 4 am ...

So it 4 am.. Gabe is sick with flu.. i am sitting waiting for him to wake up and vomit some more...
Kate keeps wanting to move out .. I keep telling her she can't be alone. She is struggling with that.. it Makes her very angry.. I wish i could help her..We have talked about her staying with her Uncle, but her Uncle not sure he can let her... not mention that there is very little room since the tow bedrooms are already being used.. But we just keep moving forward..
As for JHD/HD awareness, well got an email from Jane Mervar, she and many others put together JHDKIDS.com , any way she included me! That gave me a extra boost to keep moving to keep "shouting out" about JDH/HD.
We are attending the Sioux Valley Chapter Fall Seminar for JHD/HD. and than going to on a panel for the USD medical school students and Jay Flanagan on Monday, September 26, at 10:15 AM in Vermillion, SD...
So busy weekend!!
oh and Sunday is our wedding anniversary!! 12 years married and 15 together..Pretty insane.. and pretty blessed I am..I have a wonderful husband and beautiful children!
Gabe is vomiting so better go for now.. but remember awareness.. and remeber Keep fighting

Psalm 16:9 Therefore my heart is glad, and my glory rejoice: my flesh also shall rest in hope
God Bless and KEEP PRAYING

It's all about awareness!

jhdkids.com

http://www.wehaveaface.org 

 http://www.hdsa.org/national-convention/pastpresentations/2011-presentations/ncqa1.html

http://vimeo.com/28043836


Links to learn... links in cause our kids are not enough to have u help us fight!!
If it were u r child... wouldn't you do it? fight till every child had a chance??? That what I am doing my heart know that Kate will leave us... But my mind says.. that we will keep fighting for Kate and all the other Kids.. all the one's who past before those who are suffering now and those who are scared of tomorrow.. That why we write letters, and speak till people are sick of hearing about jhd and HD.. and we keep going!! Cause some where the treatment and/or cure is reach able!

than Jesus said ,"come to me,all of you who are weary and carry heavy burdens, and I will give you rest. Take my yoke upon you. Let me teach you, because i am humble and gentle at heart, and you will find rest for your souls. MAtt 11:28

Katelyn's story-Kate's Kronies: Sept...

Katelyn's story-Kate's Kronies: Sept...

Sept...

We are busy getting ready for Kate's silent auction and waffle breakfast. We have some items already here and ready to go. We are hoping to raise enough money to be able to buy Kate a bed and a few other items.. such as a reader that will read books to Kate out loud. We have been truly blessed with all the love being shown to us..
I will have a list of items posted here later this month.
We also have t-shirts for sale that read Kate's Kronies Fighting Juvenile Huntington’s Disease jhdkids.com If you get a chance check it out. they are 10.00 each and are purple or blue.
I thank God for Jane and Jacey for putting together the website, It is a wonderful way for people to learn and help find a cure. :)
I am also trying to put together a book for help for families like ours.. ideas and resources for help.
Many people ask how is Kate doing.. and it has not been easy. Physically :She is having more and more tremors. Her balance has been affected, along with her swallowing.. Those are the easy parts to deal with..
the hard parts is the sever mood swings and personality changes we deal with. She is not taking her meds and she very moody.. I question some of her Choices yet i Know i must let her live and enjoy life. I worry about her safety, as she struggles with Life choices.
My heart breaks when we have a break down. She is so mad at us for moving all of us together. And I am too..We keep praying and For God is with us.
Kate will be going for another swallow test and in Oct she has appointment in Iowa City.
I am going to keep fighting for research.. not just for Kate but for all the kids and their families.. I truly believe that if we can crack the JHD than the cure for both with be found.. or at least a treatment... SO thing to give families hope...
Landon is still collecting cans for research. He is still trying to kick jhd butt.
thanks for reading and keep the faith-

FOR THOSE WHO TRUST IN GOD ,WILL NOT GROW WEARY....

Tara Turn (Kate mom

I will be writing from now on.. Kate is struggling with having to move back in with us and losing her Independence. I cant say I blame her I would too.

fun, and not

i love back yeard fires.. sitting talking to Jimmy and everyone.. mom and dad..
i love summer/spring.
i am excited to see aunt susan and uncle todd i just wish dj was comming to. and even the little kids.. i miss them tooo.
i wonder if they can come home this year?
i hope so.
i am looking foeward to uncle cody getting married. i bet him and aunt shayna have pretty babies.
i get tired s0 fast these days.. mom told me uncel Kenny on the sandbulte side is not well.. it makes me so sad casue i rember him being so fulkl of life and happoness.
my stillon my casue to find a job of somesort.. she crankyh at me and mikey.. mikey can be so mean sometimes. mom says she prayers of him and she missed his smike and laughter.. i remeber. when me and him were best friends.. i think he is mad at hd and me with out knwing it.
i guess all i can do is pray for him tooo. i get so mad at him sometimes ... he gets mad at me caseu i cme to mom and dad casue it is lonmey at my house and i miss my brothers if i do not see them. Mikey gets mad and says crap.. mom told me he says it casue he trying to make me want to go out and stuff. he says i am not normal 18 cause i want to stay at home. i miss my friends but it is hard for me to say no to them and than i drink too much, and i get sick and than mom and mostly dad have to care for me.. and i feel like crap for the next two or three days.
mikey does wont undersatnd that i feel safe and i do enjoy sitting with the boys watching tv and stuff. he just angey that i changed?? i just do not know