Merry Chritmas

We are bless with so many blessing this year. We have so much hope for fighting JHD/HD... and we are trusting God to hold us when we fall.
our family and friends have been so loving and supporting this year. Thank you from the bottom of our hearts.
We pray that each and everyone of you feel Christ's love. We know this time of year can be hard.. But we want you to know you are loved.
We sometimes forget to tell people that.
And we want you to know you are.

We are excited aout this upcomming year and Kate's Baby Boy.. :)
God Bless and Much Love.

THANK YOU! FOR EVERTHING

Today is Gabe's birthday he is 4 years old.

We had fun baking cookies and giggling and of course the 2nd annual flour fight.. (1/2 bag of flour was found on the floor..) ok maybe not quite that much..:)
But we had fun.. I love my "other" KT with the baby...

we always have fun making the cookies and such...

So Gene Veritas will be posting Kate story on his blog this weekend... Please read it...
http://curehd.blogspot.com/2011/12/angel-fighting-for-cure-huntingtons.html
and if I offend anyone, I am so sorry, that is not my intent. Our intent to offer our story not for people to pass judgment on but to offer what love we have.. so that people know that We trust in Our Lord to care for us. and that we are fighting to find cure for Huntington's. We want to thank Gene for writing on this hard issue.. it is not a place where i wish any one to be. We feel what we are choosing to do is the right thing to do in our family..It is our belief and our hope that treatment for HD can be found soon so that parents and medical personal can help out loved one with HD and those at risk..

Kate is doing well.. she is eating able to keep it down.. her pain level has tempered DOWN! whoop! (Thank You God) She seems to be finding her way thru this scary maze.. She smiles and laughs with us.. she gets made at mom and fusses at me.. She hollers at her little brothers when they are being naughty...we are family that lives in today and we leave tomorrow in Gods hands...We are not perfect nor do we have all the answers, but we do trust that our Father in heaven has all the answers and so we trust him..

Life is going well
We are Blessed to have loved ones,family and friends who loves us and offer love and hope to us.
. God bless you all and Merry Christmas and Happy New Year!

As our Creator, God knew us well even before we were born. Even while we were still in our mother's womb, He loved and had plans for us.

Luke 1 

39 Now Mary arose in those days and went into the hill country with haste, to a city of Judah, 40 and entered the house of Zacharias and greeted Elizabeth. 41 And it happened, when Elizabeth heard the greeting of Mary, that the babe leaped in her womb; and Elizabeth was filled with the Holy Spirit. 42 Then she spoke out with a loud voice and said, “Blessed are you among women, and blessed is the fruit of your womb! 43 But why is this granted to me, that the mother of my Lord should come to me? 44 For indeed, as soon as the voice of your greeting sounded in my ears, the babe leaped in my womb for joy. 45 Blessed is she who believed, for there will be a fulfillment of those things which were told her from the Lord.”

46 And Mary said:

“ My soul magnifies the Lord,

47 And my spirit has rejoiced in God my Savior.

48 For He has regarded the lowly state of His maidservant;

For behold, henceforth all generations will call me blessed.

49 For He who is mighty has done great things for me,

And holy is His name.

50 And His mercy is on those who fear Him

From generation to generation.

51 He has shown strength with His arm;

He has scattered the proud in the imagination of their hearts.

52 He has put down the mighty from their thrones,

And exalted the lowly.

53 He has filled the hungry with good things,

And the rich He has sent away empty.

54 He has helped His servant Israel,

In remembrance of His mercy,

55 As He spoke to our fathers,

To Abraham and to his seed forever.”

Pregency and Abortion - My Feelings

I been busy praying.. the boys not feeling the best.. Mike was laid off for the winter. ( we were expecting this)
So the boys have enjoyed having daddy home. Kate been spending more time at Billy. That ok .. We are all learning and praying that all goes well for Kate and For Billy.
Mikey got a full time job.. whoot. :) Kate finished her Christmas shopping, i think the boys will LOVE the presents she got them..
Landon all been busy helping with key chains and bracelets... he hoping people will keep buying..:) Keep fighting..
Gene Veritas, a Huntington's blogger and a HD Advocate and is HD positive, has interviewed me about Kate's pregnancy. We have had many people make unkind remarks about the baby and Kate's decision to NOT test the baby while in the womb for the HD gene, and she chosen to have this child. and not terminate the pregnancy.
Believe it or not many people have told me that if the baby has JHD/HD it is our own fault.. (because we could have avoided this if we test the baby and terminate the pregnancy if it comes back positive).. This has happen not only on our HD Family site but in our local area.
It makes me sad that people can be so hateful toward my child and grandchild. I don't agree with pregnancy termination or abortion. I never have. I had people even ask me if I had the choice to test Kate before birth would have I aborted her.. The answer is NO! NEVER... it was never a thought or a idea that crossed my mind..
Kate feels the same about her tiny child. She has names picked out and is in love with this child already. She knows that she may have passed the HD gene on,and she knows that she most likely won't live to see the child grow up. But she also knows there is a good chance that she might NOT have passed the HD gene on and that there is hope in the research. She knows her child will bring joy and peace to us that she leaves behind.
My prayer is that her pregnancy keeps going normally, and her child will be welcomed in to this world with love and hope.
My prayer for those who say those unkind words to me and to those who believe that Kate is selfish.. my prayer for them is that they may find peace, that they can offer people love instead of anger and judgment because otherwise with out love and hope we are all defeated by Huntington's...
If we work together we can keep the fight and find a treatment!. We may not always agree with what each other does but we can offer love and not judgment.
I believe that Gene Veritas blog about the couple that terminated their pregnancy at 22 weeks needed to be told. I am sure it was painful for them and so very hard. I pray that they can heal. I also have been told that Kate's bay has no place in this world because we are not testing.. to that I say "God is in control and we are putting the baby and Kate in HIS HANDS, for he is our Creator and our Father, in Him we rest our worries. It says in bible that "i knew you in your mothers womb, I knitted you together" This tells me that GOD knows Kate's baby and He is in CONTROL and for that I am so thankful for

Christmas

it is the 11th.. Kate has dr appoint on the 22nd.. so excited for the next ultrasound. Kate been sick with morning sickness. But she doing well..and she is getting more excited.. she has picked out names for the baby.. i cant tell...:) she will tell once we know what is having...
Landon discovered there were many people sick with HD/jhd and he is asking why.. he wrote a letter to a doctor to tell them to stop messing around and find treatment!
He wanted warp up the cure and give it to kate..

Thank you Kate

I feel for my little girl.. She is so strong... I can't even began to know what she goes thur..
Her ability to live life to fullest and deal with her worries and stress is amazing... God must surly have her in his hands.
I have made many mistakes with raising my children, as I am human and not perfect at all. Having said that I can only say that I am proud to be Kate's mom.
I see all my children and there are days when I wonder why God blessed me with them. I can't say I always make the right choices with but I can say that I am thankful for them always...
Katelyn has much on her shoulders, more now with her pregnancy...I wish I could ease her mind and promise that all will be well..She knows it will be for it is in God's hands.
Kate told me that she felt that I was negative...So it made me take a invoice of myself..and it made me sad.. that perhaps there are times when the stress and worry overwhelms me. I than have to stop myself and pray.. I trust that God is in control and that his plan is not for harm...
and it also made want to fight harder for Kate and the kids with JHD/HD..It makes me mad that I hear there are research happening and that there is headway being made yet the victims of JHD/HD are not getting the help they need..
We are fighting for everything from SSI or SS to medical help. GRRRR...
We have to tell our doctors and therapist and any one else that we go to for help for our loved ones what Huntingtons Disease is and what is needed to help our loved ones. I don't know enough, but I am trying and I keep trying to learn-
I have learned that I can't go into the doctors office with Kate and just expect them to know how to help her..It makes her mad,that I voice my concerns and sometimes argue or fuss with the the medical personal, but,I feel if I don't than I am failing her as a mother and as her advocate.
We fight even at times with the victims of JHD/hd.. as we try to do what is best for them or the best we can do for them.
It rips me up inside to see Kate leaving us piece by piece yet she has shown me how to keep living and smiling and laughing, and for teaching me to hear, not just listen, for helping me to always find the positive in life!
So thank you Kate.. for helping your mom to learn to trust in God always and thank you for loving life and for your smile, Thank you for reminding me that you are still our Kate and we wouldn't want you any other way.

Psalm 92:13
Those that be planted in the house of the LORD shall flourish in the courts of our God.

one day at a time

Every Good and Perfect Gift Comes From Above!

Kate is Expecting a baby on July 4th. Scary.yes. worry, yes, but trusting in God is keeping us with hope and most of all it keeps us showing his love.
Who are we to question his creation?
He is in control.
His blessing are more than I can count.
Thank you God!

IOWA CITY

Iowa city,
We had so much fun hanging out and laughing and giggling. Kate's appointment went ok. We had so many moments that I will hold dear to my heart. We also had a fun time staying at the castle themed hotel. Landon says we have to stay again.. :) i love how much he makes us have fun and not dwell on the bad parts..
Our Lord was with us as we arrived safely and made it home without any car troubles or bad weather!!
The dr say that she had progressed :( as we expected, but they tell us that over all Kate is doing well.
Kate did great. She handled the appointments very well with out the irritability that has been there on past trips. Landon fell asleep.. he crashed on the floor and made everyone giggle..
We also raised enough money for Kate's new bed.. We are so grateful for all the love and prayers we have received from everyone.

2 Thessalonians 2
1Now we beseech you, brethren, by the coming of our Lord Jesus Christ, and by our gathering together unto him,2That ye be not soon shaken in mind, or be troubled, neither by spirit, nor by word, nor by letter as from us, as that the day of Christ is at hand.

so excited yet so shot

So much is happing and so fast.. Sue is home for a bit, with my DJ!! and so happy days.. Kate been so busy with her friend that she has not been around much. it ok ,, Landon is sick again.. :( bad cough and fever... back to dr and than off to set up for the benefit..

God be with us.. let us show your glory and praise your name, thank you for all you have give and all your blessings!

JDH IS INSANITY

yeah.. for real it is insane.. mood swings, crabby, and sleeplessness... and that just me..hahaha
I am at a lose i cant seem to find that middle ground with Kate..
I so worried that she is shutting her self down.. she seems to pull away more and more.. everyday..
I worry and yet I have to let her be Kate and let her live... it so hard.. i miss her hugs and her giggles..I wish i knew how to make her smile.. but i have to leave it in Gods hands.. because i cant handle this without his help.. and he gives me so many JHD families and loved ones to help me.. thank you to all of you!

i thank God..

With out God i could not do this.. God be with Kate..and help me to help her.. please

1Paul, and Silvanus, and Timotheus, unto the church of the Thessalonians which is in God the Father and in the Lord Jesus Christ: Grace be unto you, and peace, from God our Father, and the Lord Jesus Christ.

2We give thanks to God always for you all, making mention of you in our prayers;

3Remembering without ceasing your work of faith, and labour of love, and patience of hope in our Lord Jesus Christ, in the sight of God and our Father;

4Knowing, brethren beloved, your election of God.

5For our gospel came not unto you in word only, but also in power, and in the Holy Ghost, and in much assurance; as ye know what manner of men we were among you for your sake.

6And ye became followers of us, and of the Lord, having received the word in much affliction, with joy of the Holy Ghost.

Wow... i stirred the pot

So what a day.. and apparently I stirred the pot with my fundraising lies?? post .. I am soo sorry if I upset anyone.. Our Goals is to raise awareness and money for a treatment for JDH and HD..
I totally appreciate HDSA and all they do for awareness.. My problems is with the amounts..and i understand that u can earmark money for research.. which is great.. I guess I look at that the number one thing that should be done with the moneys raised is for research.. the more money the better the research.. 2 we should be taking care of our families on a basic level.. Asking them if the need food.. gas to get to dr's helping them find a lawyer when ssi or ss is denied.. yes I believe it can be done.. we love each other can Know what each of us go through with our loved ones and with ourselves..
I know that I have been blessed that my family has helped me to get Kate to and from Iowa city.. which 5 hours one way.. but i also have read and know of parents that cant afford to bring their kids to center of excellence because of cost of travel and lodging.. no to mention they cant afford the time off of work.. Why can we help them out.. to me that is more important than paying for t shirts to be given out at our walks..
I know it seems i am upset.. but i am not.. I just feel that we need to really look and ask our families what they need!

Blessings

So I received a phone call today.. From beautiful person named Judy. She and her husband Scoot are donating the drinks for Kate's Benefit. I cried.. Because this women as dealt with some pain... Thank you so much for u r love and prayers Judy and Scott D.
God is working in so many ways thru this..i see it everyday..

On another note. I am still researching where the monies are going for the HDUS ... Landon still has his money from the last fund raiser yet and I am waiting to see where to send it... well that he raising more for the JHDKIds.. he told out youth pastor that "i have to protect My sissy and all the other kids from JHD" I cried.. I want that faith the faith that will give me the peace that God will take care of it all and that Kate and all the other families will be ok..
God thank you for giving me Landon so I remember it all in your hands..

O God listen to my cry! hear my Prayer. 2 From the ends of the earth I cry to you for help when my heart is overwhlemedlead me to the towering rock of safety for you are my safe refuge

help for us! jhd and hd

We need a place to go to hear us... and guess what.. they are not hearing us in New york.. so we need to shout it from the rooftops!!

The HD View! - http://www.blogtalkradio.com/help4hd/2011/10/03/help-4-hd-the-hd-view-premier

http://jhdkids.com/



http://www.faithandhopesociety.org

http://about.me/WeHaveAFace

http://wehaveaface.org/Home.html

http://www.deshalamar.org/The_HD_Relief_Fund.html

All place to go to find help for HD and JHD

Fundraising lies??

So the HDSA collects money from the community in walks and other fundraising events, said that the money goes to research. What little of the money goes to the research part, but now with CHID doing the research... what does the HDSA do for people like us who are in need? When are they going to tell us what they are doing for their "families", the people who are suffering now?
The 7% allocated to research in the 2009-2010 Annual Report from the HS..which means out of every $100 sent to hdsa will only $7 be used for research and the $93 go to other parts.why such a low amount for research? This that not the HDSA purpose. This is what we need for a cure. Also if everyone says they want their full $100 donated going to research will that be done? Won't that then exceed the 7% allocation. What does hdsa do then??
They have lied to the community since 2006 and state that they do give most of the money to research.But their numbers show different!

ANger.. yep .. it is funny how money and loved ones can cause that so easily.. I cant understand why more money is not going in to research??

Tears for the people who we have lost!! and for those who cant see to see it from our view!! tears
my fund raising efforts are for the JHDI and faceless no more...

this their own report.. check out the pie chart : http://www.hdsa.org/images/content/1/5/15081.pdf

call them 1-800-345-HDSA (4372)or 212 242 1968

write them
National Office
505 Eighth Avenue, Suite 902
New York, NY 10018
212 242-1968
hdsainfo@hdsa.org


God- help me to accept the things i can not changer. AND THE COURAGE to change the things I can! amen

go from here

So where to go from here??
Keep raising awareness.. I cant believe that a dr actually thought that Huntington's Chorea and Huntington's Disease were different and one was genetically passed on and the other was not!! wow..
WE NEED MORE PEOPLE SPEAKING OUT!
DO NOT BE ASHAMED.. it makes me so sad when i hear people say well we didn't talk about cause we just hid from it.. how lonely and scary.. for the hd positive and the other family members..

Kate says when the time comes she would like to place in a "home".. but there is no way in hell that i will bring her some where far away.. actually i don't think i could be strong enough to bring her any where.. Those family that do fine placement. they are brave, the choices they make are much harder than what anyone knows!.. me welll not so much..

Also found out to that if a child is disable before 18 than they collect off the parents social security.. Check this out guys it may bring so much needed extra cash to you instead of the ssi amount.


23Then shalt thou walk in thy way safely, and thy foot shall not stumble. 24When thou liest down, thou shalt not be afraid: yea, thou shalt lie down, and thy sleep shall be sweet. 25Be not afraid of sudden fear, neither of the desolation of the wicked, when it cometh

learning

this is a wonderful site: learning and helping: anyone with HD/JHD
The_HD_Relief_Fund

www.deshalamar.org

I hate learning more about JHD... yet I love talking to people. and learning how i can help..

Thursday are are hard for all of us.. Shawn has OT in Sioux Falls and it is always busy and insane and often times over whelming... Mikey came with.. Him and Joe had me giggling just like they used to... Crazy teenage boys.. :)
Kate was home most of the day.. I learned today that I cant ask her to watch the bulldogs.. I not sure if she forget or what.. or if she she doesn't want to..I have no idea..

Her boyfriend called to Iowa city and learned that I wasn't lying or just being a over protective mom.. I think is scared him.. But he says he wants to do what he can for her.. I am glad he called.

Kate played with Gabe this am.. hearing them two giggle today warmed my heart..

it is funny how i get frustrated with her.....but i guess that is being mom..

this is a wonderful site: learning and helping: anyone with HD/JHD
The_HD_Relief_Fund
www.deshalamar.org

Philemon 1:3 Grace to you, and peace, from God our Father and the Lord Jesus Christ.
I thank my God, making mention of thee always in my prayers,

Panel at USD

So today Kate and I traveled to Vermillion SD..We meet up with Betty Margaret and Lorraine and Pete from the HD support group. We served as a panel for first year medical students to learn about HD and JHD.. It was very nerve racking.. yet very nice.. the students asked questions.. It seems they related to Kate due to her age. She answered many questions.
I am so proud of her.
I love road tripping like that with "MC KATE".. she controls the music..I love the memories we are making.. We giggled about some stupid things she rolled her eyes and me and she laughed with me.. it was a beautiful day... Thank you God for Tod

"now may the God of Hope fill you with all the Joy and Peace in Believing,So that you will be abound in the Hope by the power of the Holy Spirit" Rom 15:13

So another day.. We received more stuff int mail for the auction! .. I pray that people will come and learn about JHD/HD...
The doon press emailed and asked to interview Kate.. I said yes..She may get upset with me.. But we can deal with that when the time comes...

:)
God will show me my path



Proverbs 3
13Happy is the man that findeth wisdom, and the man that getteth understanding.
14For the merchandise of it is better than the merchandise of silver, and the gain thereof than fine gold.
15She is more precious than rubies: and all the things thou canst desire are not to be compared unto her.
16Length of days is in her right hand; and in her left hand riches and honour.
17Her ways are ways of pleasantness, and all her paths are peace.
18She is a tree of life to them that lay hold upon her: and happy is every one that retaineth her.
19The LORD by wisdom hath founded the earth; by understanding hath he established the heavens. 20By his knowledge the depths are broken up, and the clouds drop down the dew. 21My son, let not them depart from thine eyes: keep sound wisdom and discretion: 22So shall they be life unto thy soul, and grace to thy neck.23Then shalt thou walk in thy way safely, and thy foot shall not stumble. 24When thou liest down, thou shalt not be afraid: yea, thou shalt lie down, and thy sleep shall be sweet. 25Be not afraid of sudden fear, neither of the desolation of the wicked, when it cometh

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.