Local High School and ALS Awareness

[Zaphoon]

I was working at one of the local high schools this week when the choir director asked how I've been doing. I told her I've been tentatively diagnosed with PLS and explained its kind of like having half of ALS.

She understood ALS because one of her students developed it 2 years ago. The 16 year old's case is not only unusual because of age but also because of the speed of progression. Now at the age of 17, the only parts of her body she can move are her eyelids.

This high school has since orchestrated (nice musical term) ALS walks. This year, the choir director told me the school choir will be doing a song fest kind of thing for their ALS walk. People will be able to buy songs to be song by the choir. At any rate, this school was quick to be educated on ALS and quick to raise funds for a cure. Hats off to this school and all involved in their efforts!

Zaphoon

 

[hopingforcure]

I think that it awesome, so sad, but how amazing the awareness of a school. I think that is a great idea, thanks for sharing that story.. We need the youth if we want a cure in the future.

 

[brooksea]

Gosh! Tears... Great to see that but not to hear about the youngster!

Thank you for sharing!

 

[thelma313]

16 years old? That is so so sad and unfair. It is nice to hear that the high school kids got educated and are so supportive. Very touching.

 

[Zaphoon]

I was doing some work at this school 2 years ago and saw one of my daughter's best friend's assisting this girl in her wheelchair. I believe she had already been trached and vented by that time. She was in her sophmore year back then.

Zaphoon

 

[asantiago]

Gosh that just breaks my heart! It's a good reminds of no matter how bad you think life is, someone always has is worse don't they? I just can't imagine the hearbreak that family is experiencing. I love raising awareness, but not at that cost.

 

[tmasters]

So young, so sad. Her name is Haley Stevens.

The students at this high school have produced a play that raises awareness in her honor.

Haley and the play are featured in this video:
http://www.schooltube.com/video/37246/

-Tom

 

[Zaphoon]

Tom,

Thanks for posting that link. I was not aware of this play being written.

Zaphoon

 

[thelma313]

Wow. That sure tugs at the heart strings. I am pretty speechless. Zaphoon, you are pretty lucky to have met those kids. They are pretty damn special.

 

[hopingforcure]

I saw a video on her a while ago, never saw this one, gosh they are amazing teens. This is gut wrenching. We need a cure h4c

 

[tmasters]

An update on this courageous teen PALS: Haley Stevens lost her battle with ALS on September 3.

-Tom

 

[John1]

I'm wondering how common are these tragic stories of youngsters getting ALS and progressing rapidly. A seventeen year old girl was diagnosed shortly after I was here in Newfoundland. She died in less than a year. Her parents were devastated.

 

[Zaphoon]

They are very uncommon. It is extremely rare for this sort of thing to happen according to statistical data.

Zaphoon

 

[John1]

This underscores the need for an ALS registry where the statistics will begin to become meaningful. I suspect we're dealing with guestistics at the moment.