March is Hemophilia awareness month, which is great helping people focus on a still little known genetic condition that changes the world of so many people. Yet why stop at March? Ever since Dwight was born, Dana and I have made it our goal to educate people one by one wherever we met. Today I am not traveling around the USA with my minister husband, who is now disabled, so my contacts are more limited. Yet I still share info about hemophilia and my son with my book club and all the home health workers we come in touch with. Why? Because the more people are aware of hemophilia the more focus will be brought for research and the greater quality of life to those who have to deal with hemophilia on a daily basis. Although there have be great strides since my father's day, there still is so much more that can be done. Unfortunately, because hemophilia still remains a rare genetic condition there is a constant struggle for grant dollars and research- not to mention pressure needed on the few pharmaceutical companies that have held a tight control for so many years causing shortages and outrageous prices to open up the market place for the manufacturing of more factor my son and thousands of others depend on to survive and live a normal life.
The other month Dwight, Tigg (a blood brother, who also has severe hemophilia), and a neighbor fellow went camping overnight and then 4-wheeling the next day. Even though there was delays getting all the 4-wheelers running- what Dwight is doing here in the above picture- they didn't give up and with their laid back personalities after years of waiting in hospital rooms, doctor offices, and clinics along with endless days of having to lie around due to internal bleeds, they finally took off for the woods. It was a beautiful day as they explored the old railroad track deep in the Big South Fork.
While some might pity these guys, who often travel in the slower lane of life due to circumstances beyond their control, instead of feeling sorry for themselves and sitting around doing nothing they are busy living their life to the fullest setting an example that the rest of us would be smart to follow.