Hemophilia Awareness All Year Long

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.

Longer Life Span

I read in a medical magazine recently that the hemophilia lifespan is now close to the normal average.
It really made my day because thirty-one years ago when my son, Dwight, was born the lifespan for those with hemophilia was only in the late thirties to early forties.  What amazing news!

Even though Dwight's ankles are very painful when walking from so many internal bleeds as he was growing up and he is needing surgery to fuse them both- one ankle Dwight is walking bone on bone- yet overall compared to my father and the previous generation Dwight is doing great health wise. We have so much to be thankful for.

Although Dwight has had to slow down a lot in the last six months it has enabled his creative side to come to the forefront giving him something to be proud of- beside housework :)  Here are a couple samples of his craftsmanship that Dwight personalizes and sells:

2015

 

Dwight is still staying busy working at the body shop ...,

 

watching and keeping up with Case at our home every 

other weekend..,

 

and spending more time making special memories with Kara and her two kids.

2014

The year 2014 has already passed by for Dwight, who still works at a local body shop, and factors weekly to keep his bleeds under control. 
It was another year getting older..,

 having and being with Case every other weekend..,

then finding a special girl..,

and now making memories with Kara! 

Dwight at Christmas time

 Ho, Ho, Ho!  Here comes Santa's helper.

First we have to get the tree up..,

then get everything plugged in and make sure all the lights work.

Now where did that end go???

There I finally got it.

 

And at last all the work is rewarded with Christmas gifts.

Winter

Christmas time with Case and William.

Helping Case assemble one of his Christmas presents,

and getting to be with Case every other weekend.

Summer Time

Summer time means lots of outdoor activities like mowing the lawn with the help of Case.

 

 

It also means vacation time and traveling. 

For Dwight, he took a trip up to Indiana this summer to be the best man in one of his friend's wedding.

I definitely became the mother hen when I discovered that Dwight's means of transportation was going to be his motorcycle.  It isn't that I don't trust my son, its all those other crazy drivers out there.

All too soon, early one morning, Dwight was packing up his motorcycle to leave.

  

Then he put on his helmet, sun glasses, and gloves.

The engine roared to life, Dwight hopped on..,

 

 and out the driveway he went.