The Odds Are Against Children With Trisomy 18

You all know how affected I can get when I see, read about, or watch on TV a child in pain. A family struggling to accept the reality of an impaired or afflicted child in their lives. An empty crib, clothes that are never worn, a mother who has lost the light of her life.

Ah, there is so much misery in the world. Every time there is a natural disaster I have the urge to adopt an orphaned child whose parents were taken in the earthquake/tsunami/AIDS crisis/insert here. Don’t tell Stewart. Someday, when the time is right, I will bring it up.

Until then, my most far-reaching power is here, through my blog and others like it. This week I am working with a charity called Trisomy 18 Foundation which is a finalist in the Chase Community Giving Challenge on Facebook – it has won a grant for $25,000, and is now among 100 charities up for five $100,000 prizes, or the first prize – $1 million to help pursue a Big Idea! The winner will be chosen by public vote from January 15-22. Will you help spread the word to your readers to visit their Facebook voting page and help them win?

Trisomy 18 Foundation is the nation’s leading health advocacy organization serving families impacted by their child’s Trisomy 18 diagnosis, a genetic condition causing high rates of infant mortality in the first year of life. Trisomy 18 occurs when the baby has three copies of chromosome #18 instead of the normal two. Half of the babies with this condition who are carried to term will be stillborn, and only 10% of live births will survive over one year. Children who go on to live after their first birthdays can suffer from physical problems that range from mild to severe.

One out of every 3,000 children is born with Trisomy 18. That means that every day in the United States alone, 10-20 families receive the news about this diagnosis, which may take their child from them before he or she is even born. Victoria Miller’s baby boy Isaac was born with Trisomy 18 in 2001. He lived only 11 days. At the time, the support community for families affected by the condition was very small, so Miller started the Trisomy 18 Foundation to raise awareness, improve the lives of the families, and drive research initiatives to focus on prevention and treatments. Miller tells her story in a special video on YouTube.

As a mother, naturally I was touched by the sadness that Trisomy 18 must bring to the families who are affected. But it didn’t really hit me until I visited the Facebook voting page and read the comments written by those parents and relatives who had the joy of knowing their babies for as little as 4 minutes before they slipped away. Those children never had a chance. With funding of $1 million, the Trisomy 18 Foundation can make significant progress toward improving treatment and prevention of this condition.

If you are on Facebook, I urge you to click the badge above and simply vote. You can also visit the Trisomy 18 Foundation information site where there is code for the video and other badges that you can put on your own site. It’s only for a week, but it can make a huge difference in the life of a family.

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