Wednesday, June 20, 2007

Can we make a difference in a child's life?

Well, Colby stated that it had been so long since anyone had blogged. So here it is Colby.

I had all intentions to write about my Dad for his birthday and that was May 13. But, I will wait on that and write about my time in California.

I flew to my brother's who lives in Vacaville. His daughter, Westley, 12, needed to go into the hospital for a 2 week treatment. You see, she has Cystic Fibrosis, CF. Here is the description of Cystic Fibrosis from USA Health.

Description of Cystic FibrosisCystic fibrosis

(CF) primarily affects the respiratory, digestive and reproductive systems, as well as the sweat glands. The mucus secreted is very thick and blocks passageways in the lungs and digestive tracts.
Cystic fibrosis is transmitted to a child when both parents carry the recessive gene but do not have the disease. When such a couple has children, there is a 25 percent chance that one of their children will develop cystic fibrosis; there is a 50 percent chance that the child will carry the gene, but will not have the disease; and a 25 percent chance that the child will be totally unaffected.
Cystic fibrosis is the most common fatal hereditary disorder for Caucasians in the U.S. About 1 in 2500 Caucasians are affected, and more than 10 million people (one in 31 Americans; one in 28 Caucasians) is an unknowing, symptomless carrier of the defective gene.
The average lifespan of a person affected with CF is between 28 and 30 years of age. As with any "average" this means that some with this disease now live well beyond this age. With the introduction of medications and drainage procedures, children with CF, who years ago would have died before reaching adulthood, are now often living into mid-adulthood and beyond. The cause of death in CF patients is usually respiratory tract infections or respiratory distress, coupled with enlargement of the right side of the heart (cor pulmonale).

So I was able to stay two nights with Westley at the hospital. This is very hard for Westley and they other children there. Believe me, there are alot of children there. At UCSF Hospital, they have set up a school room that they do different experiments, or play games there. They have an All Star room, where they have Play Station or Ninetendo. They also have 6 computers set up for the children to use during specific hours.

Here you wouldn't see kids with skater shoes or the latest Holister or Roxy clothing line being adorned. Here you see children with no hair, with 5 different IV bags full of medicine bags on their IV poles on wheels. They have their hospital gowns on just enjoying the time out of their rooms. This was the time Westley enjoyed the most. She would down a can of ensure, which she can't stand, just to go to the Allstar lab and get on the internet to communicate with the outside world.

Seeing this got me thinking, is there anything that I can do to help? Is there local or national companies that can donate time, computers, games, and services to help these children enjoy their stay at the hospital a little more.

Honestly, I could not tell you if our local hosptials are set up nicer or if they need help in this department. This is going to be my quest. Does anybody have any ideas or connections? Let me know. is the website for Cystic Fibrosis Organization


Anonymous said...

sounds like a good time

Anonymous said...

i meant to sign that last one as elder hutchings

Abbynormal said...

I want to help. Maybe we could go and paint the kids' nails that are girls? Make them feel pretty? Gosh i don't know... I'll see if I can come up with anything good. I can't wait to meet her. Tyler says she is an absolute angel and I can see that that won't be hard to believe.

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