Sunday, August 15, 2010

The Rickster...

Here is Rickie. He is the guy we are all fired up about for this swim. He is a normal, very active boy - he just turned 9 a week ago. He likes Pokemon, military games and playing soccer. He has been very healthy lately - his last PFT's (pulminary tests) came back almost normal. But this normalcy comes at a cost - each day he takes close to a dozen pills and endures two separate half hour breathing treatments, which include the ingestion of four different medicines through a nebulizer. In addition, he is checked over by a visiting nurse once a month and goes back to the hospital to be prodded and poked 2-3 times a year. And, in the first two years of his diagnosis, he also spent at least 10 days a year in the hospital. He was fitted with a port that allows him to receive IV fluids, etc directly into his chest as opposed to trying to find veins in his arms all the time. Five months ago he spent 3 weeks getting intensive doses of antibiotics, but thanks to his port, he was able to avoid the hospital and stay home much of this time.

A reporter for the Detroit News asked me recently why we had set up a Medical Trust Fund for Rickie. "Is it really necessary?". "Will he need a lung transplant?". How many people actually get them? How many people in Michigan have gotten them?

It is hard to explain to someone who has no idea what it is like to wake up one day and find out that your child is diagnosed with something as severe as Cystic Fibrosis. The decision to set up a fund was not a casual decision. It was as deliberate as the desire to make it across the lake every year. For those who are lucky enough to go through life without living with issues like this - that's great. But for people who have lived the uncertainty and worry that we have come to expect, things like this are easy answers. You do what you can. It may not be the best answer, but it sure beats the pain and frustration of doing nothing.

And next year, we will be setting up a 501 c(3), so we can help the University of Michigan's Mott's Children's Hospital and the Cystic Fibrosis Foundation do what they do best - which is to make life better for kids like Rickie. More on that later. Right now we need to focus on the swim - and figure out where the article is that the Detroit News promised to print.

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