Mia

by Lizzie Scott Is an amazing book and true story about a foster carer not wanting to take in disabled children but forced to take in a baby girl shaken in rage by her father and mother unable to care for her.. she fits for her disabilities does everything she needs hospital stays tube feedings they fall in love with her they get everything set up to keep her and she dies in her arms at 2 years old.. letting the mother know her daughter died in her arms and not an abusive fathers. It’s a beautiful story of how she opens her heart and tells everyone to not be afraid to take in terminally ill children God had an amazing plan for that little girl ❤

The Price 

A price is what you pay.. Like writing this while lying on the floor seizures because i need to, a price I’ll probably get sicker The price..

Going for a rest by the lake unattended almost death but now limitations

Even thinking about contacting old friends leads to high anxiety fear physical illness then the anxiety and ocd of them writing back if they even intend to

Going to the doctors price one the lights give my body illusion of extreme flu nauseous due to photosensitivity even with off or dimmed, same with lights at home only certain ones  price two waking up that early causes extreme nausea price 3 pick and choose because you’ll probably get something worse because shitty immune systems 

Staying in a hotel i can’t sleep extremely anxious also and physically ill

Keep in mind I’m in constant pain so juvenile huntingtons disease is literally your own personal hell

Traveling involves travel sickness many seizures pain everywhere nauseous dizzy not worth it not even two hours 

All these things you can’t see

Sitting up for too long my body alignment is off i get extremely stomach and back sick and need a heated bed preferably mine

Rock picking the balanceing and pain it all brings like walks etc it will come on later all of the pain sounds lights

Large groups parties can’t even do Christmas as we used to at gmas for a long time now, think of noises heightened meshing and lights turned into strobe lights and the inability to even understand what people are saying 

Conversations mostly not online I can’t handle my mind has a ridge that causes pain even trying to understand sometimes easiest things 

Playing piano legos puzzles sign language i knew it all now too complex even knowing people I don’t know 3/4 s anymore 

You choose 

Do I want to eat this to later have heart teeth stomach pain even just coolaid 

The mentality of trying to calm down alone is as you already know important especially in this situation 

Walking stores park visiting it leads to sleep schedule mess up even worse than it already is yes major pain involved

Now remember these seizures full or very distressing movement events leading into all different position aweful breathing often can’t breathe painful stiffness nails digging in skin and still progressive 

Having jhd, losing everything and eventually everyone even if they just decided to leave while you have no choice but to stare at death because they don’t have to right now easier to remember then help for most why waste their time 

Are you waiting to try to sleep a way you won’t regret or do you just not care as long as you get sleep 

Using your body it still dislocates twists up it feels like if your hand id open and it closes it it oddly feels better it creates a type of pain like extremely uncomfortable aweful with it open i pay the price of closing them maybe I’ll be stuck faster but I can’t handle the pain or lack of sleep 

Often just being on electronics even just a phone makes you physically ill

It can do whatever the hell it wants to even bringing you into almost death to life situations karli did it a lot 

One of the hardest is acception understanding not judging not running away and doctors and research learning about Jhd how to help learning the information and passing it on and trust in all of this it’s extremely important 

This is only part of what is but I can’t articulate more right now thank God for autofill 

Noone is the same but the prices they pay are unique don’t underestimate this disease in children you shouldn’t have to watch a child die and the parent who gave it to them and the others with it just even watching it you pain a high price but they’re worth it so cure them and get  them more help please 

Don’t Forget The Kids

This is a great video but there are kids with juvenile huntington’s disease younger then even teens and it’s more often then you think it could be misdiagnosed as just hd, there’s even a little boy who sadly passed away at only 4 years old. I love what he says but please don’t forget these kids and the website even still only has a small part of the kids
jhdkids.com