20 year old with Juvenile Huntington’s disease(JHD). and her family's story. Mom is now writting
Sunday, September 18, 2011
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....
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....
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