Absolutely Everything

when you have me(Jacey) a 26 year old with juvenile huntington’s disease.. crying and whining into a baby camera that’s attached upstairs to my moms bedroom because i forgot my meds are and need more to fix the seizures to i can sleep and stop breathing like that and can breath and even needing her to get you water and everything it’s pathetic right, having to be this low.. it is pathetic how low the disease can go to make you in that situation. You didn’t do it, this dam* disease did. You’re not pathetic, you’re brave for still being here no matter how hard the journey is and what mistakes you made. You just have to remember that just keep strong in God and Jesus hold on and keep faith in them. The disease does all of this to you, and it leads you to your breaking point, but you survived it many times thanks to faith, God and Jesus. If one person can, and another, and another holding on to waiting for God’s will, and another and another and another we have so many brave kids fighting this that there’s no way you could call them anything but Heroic Incredible Inspirational and Comforting in knowing you’re not alone. Even when it take’s so much of your family even your little sister(Karli) at 13 dad(Karl) from hd 2 months later and older sister (by 2 years) (Erica) diagnosed with jhd, and a sister who doesn’t have it different dad (Karisa), and a Mom(Jane) who has to handle it all. God has a plan and we just need to hold on tighter then on a rollercoaster or even we’ll fall off that when it comes time to face death in the face and be scared and everything at once you’re going to need it. Just try to Stay. Just Stay.


oh my goodness

i have new glasses called theraspecs for photosensitive epilepsy, they help sooo much it takes stress out of my body and i can fall alseep better for napping.. new phone doesn’t have fb chat only my cell text which is nice.. more real seizures then shaky ones.. my head and mind have even before the glasses been blah can’t understand what they’re saying can’t say yes or no to what to eat etc.. i just sit still and watch a movie play my game, but mom says its jhd and i’m sure the seizing doesn’t help either.. but whaa it’s like who what where when how, oh. hmmm… like completely invalid in that way


JHD Itself

This is amazing, people are messaging the jhd fb page questions about jhd mainly about the timeline but more also so i send links of videos and share photos it’s soo great asking about just the kids!! this is what these kids DESERVE and need more of!! This is soo overdue and hopefully a step forward!!

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