Tuesday, September 23, 2008

STARZ Philanthropists, Anna and John Sie


The Down syndrome community has been blessed this year. First, we get Sarah Palin, and now this as described in Rocky Mountain News:

John Sie has a straightforward goal when it comes to Down syndrome.
The retired cable television magnate doesn't just want to finance incremental study of the condition. Over the next 10 years, he hopes to help scientists cure it.

To that end, Sie and his wife, Anna, announced Monday that they have committed $34 million to create the Linda Crnic Institute for Down Syndrome.

(want more article? go here)
Millions will go into Institute for Down Syndrome

Saturday, September 13, 2008

Perspective on Palin

Recently I was asked my feelings concerning Sarah Palin, and her effect on the Down syndrome community in general.

Two words:
Love Her!!

All politics aside, when she and her husband first had Trig, we all knew it. And we rejoiced in the fact that Trig was loved and not discarded like so many are before they are born. We welcomed her into our hearts as a soul-sister into the club of extra chromosome.

Then when she was picked as Vice President by John McCain the national spotlight hit and man, it was blindingly hot. So many issues, so many emotions, so many divisions. People have their feelings about who they want to support.

In one forum I am active in, mostly she received support from the members. There were some Obama-ites who really couldn't stand her, even with the common bond of having a child with Down syndrome. There was a lot of accusations and name calling until the forum owner put a stop to it.

In general, she has caused quite an uproar in the Down syndrome community! I think it's great. Most people totally support her and absolutely love her, not only for who she is but for her promise to us as parents as given in her speech at the Republican convention:

And in April, my husband, Todd, and I welcomed our littlest one into the world, a perfectly beautiful baby boy named Trig. From the inside, no family ever seems typical.

That's how it is with us.

Our family has the same ups and downs as any other — the same challenges and the same joys.

Sometimes even the greatest joys bring challenge. And children with special needs inspire a special love.

To the families of special-needs children all across this country, I have a message:

For years, you sought to make America a more welcoming place for your sons and daughters. I pledge to you that if we are elected, you will have a friend and advocate in the White House.

She may not be perfect, she may not have all the answers, she may even disagree with me on some political issues. I don't care. She's my girl, my choice for VP. I was going to vote begrudgingly for McCain-if only to thwart Obama from getting in-but now? I am back in this election, baby!

Tuesday, September 9, 2008

Would you cure your child of Down syndrome if you could?

Why would people be against a cure for Down syndrome?

One theory is that it's all about pride and acceptance. To want to cure something implies that the something is bad or abnormal, and people don't want to feel thay they are bad or abnormal. They want love and acceptance, and can you blame them?

Why can't we love and accept those who are different now, and if there was a cure why can't we accept that too if the person wants to be cured?

I love my daughter with all my being. I am so proud of her and think she is the most adorable thing ever. I love other people with DS, too. There is just something about them that is very special. It's like looking into the eyes of God.

On the other hand, I am also sad for my daughter in some respects. Yes, she will achieve to the best of her ability, find happiness, and have a good life. She makes people smile.

But there will also be things she will never do. She will always have to struggle. She will be the butt of jokes from cruel people. She is more vulnerable to predators. She will have trouble with speech. She has a higher chance of becoming sick from a myriad of diseases including Alzheimers and leukemia.

Despite the struggles, she WILL have a good life, she WILL inspire people, she WILL help in promoting acceptance and awareness of Down syndrome, and she most definitely WILL love and be loved for who she is.

So would I cure my daughter if I could? I think I would, with mixed feelings. I would miss some things about Down syndrome, but as for the health issues, I'd kiss them goodbye and never look back.