There are for better thing sin need of cures...

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I was watching a Japanese Drama about a girl with this progressive disease. It's very sad too because she died at the age of 25. It makes me think how so many parents or others out there want a cure for autism... yet when you think of rare incurable diseases, its like... no one cares. Why is Autism so special? What makes it so bad that everyone has to cure it?

http://en.wikipedia.org/wiki/Aya_Kit%C5%8D

That's about the girl. The disease she had was called Spinocerebellar ataxia. There is no cure for it STILL to this day. SO tell me, for those who want to cure autism, why do you think Autism needs a cure more than any other condition like this one? It handicaps her severely to the point where she can't do things herself. She can't walk, talk, speak, eat or do anything but lay in bed and suffer.

Would you rather have her disease or would you rather have a child with autism? I mean I'm not being mean here its just... this story... if you guys could just see it then it would break your heart. She was so young when she got this disease and she was still young when she DIED because of it.

my nieces daughter has ataxia-telangliectasia very similar and about the same prognosis

Really? I almost cried watching this. THe more I get into it the more I get close to tears. It's sad because we have so many people saying, "LET'S CURE AUTISM NOW" but hardly anyone thinks about these other diseases. It's even worse when someone as young as Aya had to get it at eighteen. She never even got married!! She died living with this disease and it breaks your heart.

I would rather cure something like her disease instead of wanting to find a cure for autism. It's not something that NEEDS a cure... not when you have things like muscular Dystrophy or something like that. I mean cancer is just as bad. I just get so mad when parents want a cure for autism. It's like, they don't think about other parents who might have a child with an incurable disease that pretty much takes away their whole life right before their eyes.

I'm not saying all parents are like that... but yeah. This drama inspired me to value you my autism. Because even though having autism can be difficult to live with, I still value you that because I have something that Aya SHOULD have had if there was a cure. I feel so bad for her being so young.

I wish more people would recognize this...

I know me too! It makes me sad seeing so many people wanting autism to have a cure... I mean we don't need to be cured, do we? We can still learn and progress, can't we?

Anyway, for those who don't know... this is from the drama. It's a video tributing to her and it explains the symptoms and shows clips too of her condition and what it does.

[youtube]http://www.youtube.com/watch?v=p4LUsxKB2Xk[/youtube]

It's sad.

yes ceyanne is only 5 now but she may only have until she is 15,25 at the oldest.my niece is very distrought,ceyanne hasnt been told she is sick yet

Yeha but tis hard... even in this drama... her parents didn't want to tell her because they wanted her to live out her life before it got worse. It can be hard to except, especially without a cure, its like saying, "Someday you will die early." I mean I want stuff like this to be cured! It's sad... and I can imagine how hard it is on you're niece's parents... even when she is only five, they want her to live her life as much as she can... and that's the best for now... even though one day she might not live to be fifteen... at least she will still hold close the things she did.

I also feel that there are better things to find a cure for as well.

im glad your into this because these conditions are so rare there is very little research done.there are less than 500 cases of ataxia -telangliectasia in the us,so thers not much awareness.my sister is always doing these silly nickel and dime fundraisers but that wont do much.just a drop in the bucket.so its a race against time for these kids.right now there is nothing we can do.the best thing we can do is talk about it and spread awareness i guess.my sisters 15 dollar a plate fundraisers wont get much

That story reminds me of the movie Lorenzo's Oil. I don't know whether the real Lorenzo is still alive, but yeah, money should be given to currently-incurable diseases instead of spending money on things that don't need to be cured (like autism and ADHD). Of course having a neurodiverse condition can be a pain in the ass sometimes, but nobody has ever died from a lack of Ritalin. Unlike what Aya had, which deserves a cure a helluva lot more.

Yeah... I really want to do something to promote Aya's story. I mean in the drama she says how much she wants to help people and when you realize at the time, she is fully and permenantly handicapped and can't even move or function... but I think she still can help people if her story is promoted to those who did and are still suffering this sad disease.

My friend said that her uncle has the same disease and its heartbreaking because I see so many people raising money to cure autism. But why cure it? Are we dying? Are we sick? We aren't like those who actually are dying or are sick. We might have trouble with functioning in the real world but with therapy and managment... some of the most severe autistic cases can become less severe. Yet for this diseases, that's the complete opposite.

Aya tried to overcome this even when she kept telling herself she would it slowly took away everything.. her ability to walk... then her ability to move and hold or grasp things... ehr ability to speak... and then ehr ability to swallow her own food... until she was completely and permentally handicapped without being able to move whatsoever.

I just don't understand... why autism needs to be cured when there is so much more diseases out there that are so rare and yet so deadly to kill so many young people. I would rather have a child with autism then have a child die of a disease that killed them before they could even live a full life, don't you?

I mean you don't see anyone trying to cure mental retardation or cerebral palsy either, do you? Those conditions can also be disabling for a child. I know Autism can be for more severe cases but... what makes Autism so special that it needs to be cured?

It might the fact that kids with autism usually look healthy enough, they just have "weird behaviour" ... so it is easier to believe that some magic cure will be found that changes the behaviour of autistic children into NT behaviour.

With kids with physical disorders, and very visible neurological disorders like cerebral palsy, you can see that something is seriously different in their bodies or brains - you cannot just think it is a normal brain and body acting oddly, it must be an abnormal body or brain - a lot harder to fix.

The real problem is that people don't believe in the reality of "invisible" conditions like autism as much as they do in visible ones like cerebral palsy. Somewhere deep down, there is the old hope that the child with an invisible disorder will one day "snap out of it". People think that psychological differences are somehow "imaginary" or at least easily changed. They cannot see the neurological differences that underlie the psychological differences. If a child looks physically healthy, than it "must" be like other children and any differences must be fixable and temporary. At least, that seems to be the way many people think, as far as I can guess.

I think it must be important to understand that there are some people with serious difficulties, really bad problems that are inbuilt. And I think though whatever we are at our sort of level requires no cure it doesn't mean that they should be left out. It's just that people look at everything as one big problem: 'Autism'. I think in reality there are many distinct parts to this 'autism' and I even suppose that people are calling whatever an 'autistic' suffers from autism even if in other people they would be considered completely separate disorders. That some of these inflict upon people such problems that asking for a cure for those particular issues would be right.

However, you hit on the phrase we can learn, because I have learned my way out of every supposed 'difficulty' I have ever had. Whenever I suggest the same every one starts shooting everywhere like old western cowboys in a saloon. I think you're just seeing the same problem miss: Everyone's in fortress mode.

there are a couple of websites. ataxia-telangiectasiacomunityatcp.org and atkids.hope.cure the names are long so i might not have the right url but you can google them.if anyone wants to know more about these deadly ataxia's just send a private message

That is because not everyone can learn their way out of all their difficulties.