Superheroes

I can tell you about those!! These kids with juvenile huntington’s disease get so underestimated sometimes all around the world… when people assume it makes an ass about them and you. Now the important stuff, they do everything with a brave ability to do things. Just breathing is a battle, so imagine how hard it is from sitting up, to someplace, to riding a horse, to basically anything, and they’re all children, who are dying. They still live. As soon as Byron was able to walk a few steps he got on a horse because it’s his passion!! Breanna L crossed her fingers and plays hand games with her brother, she made it to the zoo recently isn’t that incredible!! To go from princess dresses to hospital gowns is just plain cruel, and if you’ve known any of these kids you know it’s sick. You make it better for them as much as possible of course. There’s things some kids have and some don’t some things some kids can do and others can’t, and every kid is unique, no matter the cag the age the dates they’re all going to present differently. I know that no matter where I am they are somewhere going through this disease also. There’s a little girl Megan who raised money for the research in Cali and in the process managed to more kids with this Herbies!! Herbie is a very special stuffed animal i’m blessed to have gotten one!! He’s a hedgehog ok, but he’s much more then that. He’s a connection to other kids knowing we’re not alone, he’s a fun guy to play with mine tends to keep taking all my candy though, he loves chocolate and smarties! It might not make as much sense to you as it does to me or the other families, but he’s incredible, he’s hopeful Megansherbies4jhd. They’re kids with jhd riding camels and swimming with dolphins, there’s kids who go to give kids the world village and run and play at parks and in the village that’s pure magic. They make friends with the staff sing on stage they meet their favorite characters and just be kids. Even there they’re brave though can you imagine how much work it is for a little kid in a sick body to do all of these things? They’re amazing!! and so is everyone who makes it possible!! There’s a girl named Rachel S she is Mrs. Rachel Styles’ she married Harry from One Direction, it’s a true story at the young age before becoming an angel in heaven at 17 years old. Kathleen just wanted to be a Princess when she grew up how cute is that, she had to say goodbye to her Mom who passed away from jhd at age 24, after a bit Kathleen then went to go be with her Mom from this monster at 9 years old. Can you imagine watching your Mom go through it, seeing her pass away and still having the heart and bravery to live life and remember her Mom until she went to be with her. The younger they are it seems the sooner they die. It’s a genetic progressive painful brain disease, that probably killed a parent of theirs and is now in them as a child form. They lose their abilities to do everything especially things they really love, but they do all they can. When they say they can’t they mean it. When they say they can truthfully let them try. When someone else says they can or can’t tell them to go away. Only they know what they can do and their constant usually parent knows most of what they can too. I’d tell you all about how incredible these kids are but there’s not that much room and there’s so many you should know more about. These are just some examples of superheroes. Like Super Terry who does have a real comic of him kicking out jhd in a comic form, he loved wearing his super hero stuff, even in hospital beds he had the muscles to show you. He passed away from this monster at 17 years old. I may have it but i’m still and will always be Team JHDKIDS. When blowing out a birthday candle is all they can try to handle, i can almost guarantee they’ll try their hardest and fullest at just that one candle. They deserve more then up to even 15 years after symptoms show. There was a little boy who died at age 4. Most don’t make it very far and they’re just kids.

jhdkids.com

https://www.facebook.com/curejhdkids/

https://www.youtube.com/curejhd

My Superheroes

 

 

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