MAD... sorry

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

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

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

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!