Kate's Kronies

MAD... sorry

2012-02-09T07:54:00.000-08:00

http://highwire.stanford.edu/cgi/medline/pmid;22095692

So much hope we have... and yet someday it feels that the mighty dollars is all medical field seems to care about. I can't understand why the wait, why the dragging of feet. It is bad enough that so many kids and adults have Huntingtons, let alone the fact we have so many at risk.. WHY?? .
I sorry to ranting and rave.. Usally I am full of hope and prayers. I just read a artical and it makes me sooo upset that so much money is being spent and yet we HEAR NOTHING on treatments .. instead I get letters asking for more money and if we can sign Kate up for research... WHAT RESEARCH??
I still have hope and faith ... I know the cure is out there... They just can't seem to get out to the victims of HD and JHD. The fact is that if all these so called reseachers would stop looking at the bottom dolllar and WORK TOGATHER , the chances of moving forward would be a reality not just a dream... Why have 67 diffrent research labs that do not share information??? DOSE THIS MAKE SENSE??
I am just so sick of getting request for money, and hearing "we are here for you, our families" we will help, just ask.. yet when a request is made there is no response.. OR worse I hear, "you have to talk to your local chapter. And see what they say, than u come back to us. But we really can't help all our families" The need is too great." oh and by the way, would you like to donate??"
I refuse to understand this.. I won't!! I get how the politics work, and since it is the mighty dollar that runs it all.. it make me sick to my stomch..
I know there is RESEARCH HAPPING and there IS HOPE.. What I saying, "is that we as a whole,we need to stand up an shout, WE WANT RESULTS! WE WANT HDSA TO SHOW US WHAT OUR DOLLARS ARE BEING SPENT ON.. not some damn report that says x amount of dollrs are given for this and so on.. WE WANT TO SEE THE RESEARCH, WE NEED TO SEE THE RESEARCH"
We live with HD and lose our loved ones more and more each day! No more of these 1/2 hopes.. Give us some concert.. human trials or some thing.. AND FOR THE LOVE OF GOD, SHARE THE RESEARCH WITH EACH OTHER! I DON'T CARE WHO GETS THE CREDIT FOR FINDING SOME SORT OF TREATMENT.. THE ONLY THING THAT MATTERS IS THAT ONE IS FOUND, AND THAT WE CAN HAVE ACCESS TO IT!!

Sorry everyone, please know I do SUPPORT HDSA 100% AND THEY DO MANY GREAT THINGS!! My point here is more toward researchers.. that act like they can't share information!! My daughter will lose her fight with JHD, but God willing, her child will have a chance, if we can get these researchers to come together!!
families of the victims of HD and JDH know exactly what i am talking about. We seize anything that give us a chance to fight... The research about QZ10 has been going on for over 15 years!! and there is no real answer.. dose it help?? dose it not help?? even the Centers of Excellent have different opinions. I even had one DR tell the cure is about 6 months away.. I wish! Can we get the information togather and let our familes know??
there are some excellent bloggers that try to keep us all informed, but that is no enough..Kate's dr is not going to read a blogger and even if he does, getting the right information and making sure it is true, it another hurdle.
So where can a dr get the right information??
Ok i am done.. Have to take Shawn to his OT today and make sure his therapy is working... ( Shawn has aspergers. (they have a basic idea and plan) Even though there such a WIDE range of autism...
thanks for all the prayers and hope, and KEEP SUPPORTING HDSA!! THEY WILL ALL COME TOGETHER AND A TREATMENT WILL BE FOUND!

ANOTHER DAY

2012-02-04T20:34:00.000-08:00

Sleep kate

So much time has past.. so much happening.
I wake up some days and just lay there for a momnet before my world get going.. I pray in those moments... I pray for Our Lord's strength..

Kate and Baby Levi(my little nephew)!!

Gabe being Gabe

So many people tell us that We are brave and strong to go thur what we have been with Kate and Shawn (he has Asperger's, a form of autism)But we would tell you that it in God hands, and Kate having JHD does not change who she is.. or how we treat her. Or at least we try to not let it change how we treat her. Is it hard ... yes somedays harder than others. But we know that we are going to be fine. That Our Lord has plans for Kate, Shawn Landon Gabe, Mikey , and Me and Big Mike. We may not understand them but we know that he is holding us and he is our strength.

Kate and Ella opening Christmas presents!!

Gabe and mommy

We rasie money for research,.We keep hope and faith in our lives. What else can we do??
I have seen so many families struggling worse than we ever have or ever will.
I hope this all makes sense... I tend jump from one thing to another..
There are things that make me mad and make me want to scream from the rooftops...
1. I HATE HUNTINGTON'S DISEASE!!!
2. I HATE FEELING HELPLESS WHEN MY CHILD HURTS.. ANY OF MY CHILDREN... FOR ANY REASON!!

shawn and mommy.. Shawn is not so happy

3. I HATE STRESS. IT MAKES ME FORGET MY BLESSINGS AND MAKES ME REACT IN NEGATIVE WAYS

My husband and kids mean so much.. they make me smile, they complete my life.. I thank God for them everyday.


Kate eating at IHOP.. when we found out she is having a baby girl!!

I can tell you I get frustrated on wading thur all the information about JHD and HD, the trials, what is true and what is wishful thinking, and most of all the lack of reseach being published and put out to people. I get upset with all the policictes of the research and people arguing with each other... WHY?? becasue we are all fighting for the the same end resulte... a treatment for JHD and HD!!! I get soooo angery about that. We should be able to come togather and rasise awarness and keep the funds up... But instead I hear and see people with so much confusion and 1/2 truths.. I wont go into deatil.. It just insane to think about other groups( cancer, heart austsim, all wonderful grups) and yet we are so closed up... Even to the point of pushing away people who suffer from HD.. What do i mean you ask...
I mean this....1. it should not matter if u are hd or jhd... 2. whether you have been tested or are at risk, showing signs or gene positive.. U should NEVER be afraid of talking to people and hiding is not a optioon.. I I fight not just for Kate.. But for anyone who has felt the effects of HD/JHD!! I understand that HD was not talked about so much in many familes.. that so many people hid becasue the behaviors.. So can we keep the momention of so many that have fought to bring hd to the "main stream"
to name a few
                      1. Jane Mervar and her GIRLS! jhdkids.com
                      2. Gene Veritas and his wonderful BLOG www.curehd.blogspot.com/
                      3. Katie Moser -firstgiving.com/fundraiser/katharine-moser
4. Button boy, Landon Hansen http://www.facebook.com/ButtonBoys
                      5. James Valvano- wehaveaface.org
6. Rebecca Rose and her granddaughter- Kathleen

I know there are hundreds of others.. all fighting to raise awrness and fight for loved ones..
I know we have hope, but we need people to scream so that huntington's is as wide know as cancer!! Please forgive me if I did not name you. U are not forgotten and U ARE APPRECIATED!!

So when peopl look at me and say how can you talk about what is happening to your daughter with out breaking down?? I say because She is LIVING.. she is fighting.. and by TALKING ABOUT JHD AND HD it the only damn way I can fight back...
I am tired of people saying "yeah, that needs to be done" and waiting for some else to do it...
Is JHD and HD sad?? WELLLL DUH.. yes it is.. but there is always hope ...
We prepar for war but we pray for peace!!
So i am done fussing for now... I am frustreated at what read at times at how SLOW it seems the research is taking place.. yet I keep going..
I love the people that have entered my life due to HD... (many blessings and love to u all)
But some day soon I would love to receive the message that a treatment is being tried out on humans for HD and JHD.. and
finally before i go Home to our Lord.. I pray that there a working Treatment to slow HD down or at least combat it ...

OH AMD BEFORE I SIGN OFF... HAPPY 7TH BIRTHDAY TO OUR BUTTON BOY..
.LANDON EUGENE HANSEN

hello again

2012-01-31T19:42:00.000-08:00

Kate and Baby Mercy ..

Hello again, I am sorry it has been such a while since we posted.. We have been busy with the "hoop-a-thon" that was put on in Rock Rapids... We had so much fun that day.. Landon turn 7 on Saturdat {Feb 4th} He is super excited to be student of the week and is enjoying the nice weather this week,

Kate eating PICKLES.. her craving..")

Kate is doing well. We get to see ultrasounds every month and in Jan we found out Kate is having a baby GIRL!!! She is so very excited that she is having a little girl. We are looking to bulid off Kate's room to make a room for the baby..:) Kate has been mantaining her weight and eating very well. She stuggles a bit with mornning sickness but even that is starting to get better.

Mostly We PRAY.. Pray that Kate stay heathly as able and that she keeps her spirits up. We know God is in control. That gives us peace.

Kate's baby Belly..17 weeks!!!

Kate smile is something we haven't seen much of..Just because she worries about her boyfriend and about us. But over all things are going very good!!


What a wonderful smile to see Kate!!!

Mikey, Kate and Dustin... they were watching the boys shoot hoops


Mike Gabe Cameron and Landon and Shawn at the hoop-a -thon!!

Watching the boys at the hoop a thaon was such a blessing./. and so much fun.. We were able to meet so many people and talking to them and just hugs and prays.. it was WONDERFUL..

Some days i get mad at Huntington's .. So times i get mad at Kate.. But I know it is not Kate.
I try to stay postivite and remeber that God is in control... there are days that is makes it hard. But i keep praying.. and I keep praying..

Merry Chritmas

2011-12-24T08:46:00.000-08:00

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

2011-12-17T20:24:00.000-08:00

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

2011-12-14T17:05:00.000-08:00

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

2011-12-11T18:10:00.000-08:00

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

2011-12-01T21:36:00.000-08:00

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

2011-11-25T21:03:00.000-08:00

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

2011-10-30T10:48:00.000-07:00

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

2011-10-20T21:12:00.001-07:00

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

2011-10-12T19:16:00.000-07:00

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..

2011-10-07T05:56:00.000-07:00

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

2011-10-06T09:43:00.000-07:00

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

2011-10-03T09:19:00.000-07:00

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

2011-10-01T11:25:00.000-07:00

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??

2011-09-30T21:55:00.000-07:00

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

2011-09-30T07:06:00.000-07:00

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

2011-09-29T19:35:00.001-07:00

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

2011-09-26T16:33:00.001-07:00

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

2011-09-23T05:30:00.000-07:00

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

2011-09-22T10:06:00.000-07:00

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.

2011-09-22T06:34:00.000-07:00

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

Kate's Kronies: it 4 am ...

2011-09-21T02:57:00.000-07:00

Kate's Kronies: it 4 am ...

it 4 am ...

2011-09-21T02:26:00.000-07:00

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!

2011-09-19T19:56:00.000-07:00

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...

2011-09-18T18:15:00.000-07:00

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

Sept...

2011-09-18T18:08:00.000-07:00

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

2011-09-17T23:48:00.000-07:00

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

2010-06-05T06:38:00.000-07:00

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

today

2010-06-03T04:07:00.000-07:00

mom wants me to find a job.. i made it thru Prom, and graduation. it was sort of fun. to many people i think.. but it was good to seee everyone! and laugh and talk. My friends from Rock valley were there and it was so so good to see them. i miss them.

cody is getting married in like 9 days and aunt susan will be here, i cannot wait to see her.

I am going to bed

once

2010-01-14T15:43:00.000-08:00

we are back from iowa city. I hated the whole testing crap.. but i made it and got thur it all.. they do not want me to drive anymore. and mom and me have a meeting on friday with the dr to explain the testing results.

Landon came with us and it was fun. well the ride down sucked, i thought we were going to die...it was blowing snow and cold and we were bucking drifts in mom's little pt. crusier. it was horriable and than we made it Boone on thursday and than to iowa city for the appointment..

Christmas was great with DJ here. I miss her.

Mom is worried as always and dad is withdrawn. Mikey is being mikey and doing what ever he wants... i think mom and dad are are lost with him.

the boys are doing good... they are funny. but i get tired of them sometimes. they are so loud and noisey.

Today

2009-12-10T16:46:00.000-08:00

hi, guess i have not wrote for a few days. Mikey is now 17 and it great. Mom made aunt juice take our pictures...i am hoping to see them soon. poor Aunt juice had to put up with us all.. but mom said the pictures she saw were GREAT. I think it is really cool the aunt juice still takes pictures, She took ones of me when i was like 5 at her collage dorm room and and mom still has them, they are some of her favorite one of me..(blahh)
the boys of course where being naughty, Aunt Juice was so relaxed and not mad or nothing. She rocks.
Mom and me went Christmas shopping at Good will. and we got the Landon a cool under the sea puzzle and Shawn a counting game. it was really ok spending time with mom like that. I got some kick ass ti shirts one was dime bag Darryl tshirt!!
me and mom talked about planning my funeral. I know i not dead yet but, i want it planned and done with so mom and dad do not worry about it.
also it sounds like i am getting SSI. and we found out that me and mikey get money from Jeff from Social Security. For something called survivors benefits... would have been nice to know that 2 years ago, since i only get the monthly money till i am 19 or graduate high school. the lady at the social security office said that there was a letter sent to the estate of Jeff. but yeah who knows.
mom and i also talk about not stressing about the small stuff. and i think we do not do that anymore, at least not for the most part.
I just do not let it get to me. Mom says that i get snappy and i guess i do, i just really tired all the time.
DJ is coming out for Christmas so i am super excited about that.
night

Thanksgiving day

2009-11-26T21:29:00.000-08:00

Happy Thanksgiving!! Another full belly...Good food...lava games! Movie with the uncles -yeah it was fun. Mikey is sad tonight. he is mad that i Have jhd. he is pissed off. he came in the house and went to mom. i hate that. i am sorry that he is upset about me. Me him Dustin and bre, we were to take over the world. now they worry about me. I really hate that
Gabe sure loves his uncle jimmy.,mom is redoing her new room. i am now on the main floor and at first not happy about it. now it OK. mom was fixing up her room. and her and dad were fussing at each other. everyone is so sad, and angry. i wish it would just go away. i am OK, i am just sad when they are, i see them act like nothing is wrong but they watch me. mom is worried i will fall dad worried about my temper and Mikey is mad that we not going to grow old together and everyday he looks at me in the face and sees it. I hate that. i am asking God to save my family.

2009-11-20T11:45:00.000-08:00

mmm today is great..it is friday and i am will be done with school in less than 4 months!! yes!!! i not sure what i will do afterwards but i will worry about that later.
Mom told me that she may not do the benfit that somepeople where thinking of having for us. She seems a sad. i think it is casue she is ashamed she needs help. I think that person can piss off!! i am so not going to nice to that person!! Mom is already worried enough.
Gabe was dancing last night!! he was stompping his lttle foot and wigglinging his butt!! it was really cute!!

Katelyn Story it's long

2009-11-18T20:32:00.000-08:00

I am unsure of how to begin? I will let my mom start my story-
Katelyn was born on July 19, after 9 months of worry and 18 hours of hard labor, to a 16 year old girl. Katelyn's Nana was the frist person to touch her other than the Dr. She was a tiny little girl weighing in a 6lbs 7 ounces but was 21 inches long. (it was her long legs). She was very fast learner and was able to capture the hearts anyone who crossed her path. She learned to walk at 9 months of age and was speaking in full sentances by the time she was a year old.
She grew in to a fesity little girl, a tomboy for most of her todddler years and elementry school years. She was very smart and was often found to be a peace maker and could be found defending anyone who was hurt or sad. She made friends quickly and formed lasting bonds to many people.
Katelyn lost (My mom)Nana on Nov 11, 2006, and Katelyn and Mikey lost thier biogical father on Mother's Day, May 12 of 2007, he died due to complactions of Huntonings.
Durring this time we noticed a change in Katelyn, she went from being a very happy and out going young lady-to a very with drawen and unpridicable young lady. Mike and I just assumed it was due to the stresses that she was dealing with all the hard time and the move from North carolina, back to iowa. Only God knew what had started going on with Katelyn:
Now i will let Katelyn tell her stoy-
I changed, mom says. I look back now and I can rember stuggling in school and being angery that i could not "get it". We had meetings with my teachers and i would tell everyone i was trying. I was sleeping alot and skipping school. I was trying but for some reason it just would not stay with me. I know i was mad about that. I got mad at mom and dad for not understanding. Up to this point i had been a honnor role student in all but math. I started to with draw and just be with Mikey. Me and mikey alway knew we had a chance to have the gene for Huntingtons. But we never dewlt on it and we never really worried about it. Than we started to really research HD. We were afraid that mikey was showing signs. So mom and mikey went to get tested in Iowa city. On june 10th 2009 we recvied GOT BEST NEWS, Mikey's test was negative for the muated gene!! They tested Mikey before he was 18 becasue they thought he was showing signs. I turned 18 on july 19th, and told mom that i wanted to be tested for the gene.
so mom made the calls and got it all set up. and me and mikey and mom went to Fort Dodge for my blood to be drawn. On OCT 16th, 2009 we went to des moines to recive my results. My "CAG" count was a high 57. What that means is i I have the gene for Huntonings. I have been showing signs for the last two years. But not the physical ones so much, till just the last six months. I have been stuggling with the thinking and rembering, and learing new things. I have lost over 30 pounds, and according to my mom and the dr, i do not have that to lose. I know my mom and mikey sitting in that room when the test results were read were upset, but i knew. I felt bad for mom and mikey. Mom said she was mad. But she is doing better now. Mikey, he is tring to be brave and stand at my side like the silly brother he is. Dad is always looking out for me. he just wants me happy.
Me i am doing ok today, i stuggle with it sometimes. I get mad when i cannot rember things or i think that i won't see my baby brothers finish high school. or get married and i never will have a baby. It makes me sad that i know my mom and dad will have to take care of me again and that some day they will bury me. It makes me sad that Mikey and me won't get the chance to sit on the front porch with our grandkids running around. But i refuse to stop living. but somedays it can be overwhelming. I think thats it ok that i feel that way.