Why being a poster child might be positive (A sip of life)

[Guest guest]

Oh this is too funny.. almost uncanny... but some of you may know of

Saal, a YA with severe JRA that died while ago. Her father put together a

tribute type page that sends news and tidbits to think about related to his

daughter but mostly to anyone in general.

Anyways, I got mine in the email today and it was about being a

self-proclaimed poster child. It made me laugh given one of the convo's some

of us have posted on.

I have said that I feel both bitter/sweet about it. But anyways, apparently,

this was something that loved to do and again for the reasons that

myself and others have stated.. to raise awareness.... support.... etc.....

Anyways, here is what was said as well as the link to sip of life if any are

interested in getting these emails and stuff.

Some people with impediments or disabilities prefer to maintain a very low

profile and not draw attention to themselves. did the opposite; she

fully engaged and became highly visible. In doing so, she led life for the

most part the way she wanted, finding ways to do most of what she desired in

spite of all assumptions and presumptions of her limitations.

was outgoing in how she lived with her condition. Instead of hiding

from conversations and stories about Juvenile Rheumatoid Arthritis (JRA),

she would shine a spotlight on the subject. She was an outspoken advocate of

bringing her illness to public consciousness.

While some are reluctant to be associated with a breaking story about a

medical advance pertaining to their condition, was eager to

participate. The media could always count on her for a quote. It was a

tangible way to contribute to the furthering of knowledge and awareness that

could lead to advancing treatments of the disease. This was far more

important to than her privacy.

Being public about her condition was more important than concerns about how

people might look at her as someone to pity or worse, ridicule. Fear of what

others thought or said was set aside by her and her parents from the start,

choosing to confront the disease head on.

From the time she was little, she appeared in many articles and brochures.

Especially memorable was her presence in a Mc's TV advertisement

promoting the new Mc House at Children's Hospital at Stanford.

eagerly participated in a story about her kitchen, designed to adapt

to her physical needs. She was delighted to have a picture appear on the

front page of the San Francisco Chronicle Living Section showing her at work

in her kitchen.

Bringing to public attention, even after her death, through the Sip

of Life Website is part of her continuing commitment to exchange privacy for

the opportunity to further shed light on her disease and to broadly share

her highly successful approach to life.

Even so, people interested in 's story profess that while they don't

want to intrude on the family's right to privacy, they realize would

not want it any other way. She was a self-made " Poster Child, " and very

proud of it.

*Which cause or concern are you involved in because of its impact on you?

What have you shied away from because it was too painful or unsettling to

face?

Who comes to mind as someone who took something bad and made of it something

larger than themselves in pursuit of good and of greater meaning? *

*A Sip of Life:

**www.sipoflife.com*<javascript:ol('http://www.sipoflife.com/');>