Fighting to Save My Kids' Future

The past few weeks I have struggled to decide what to put in this blog entry because I do not want to force an extremely important personal topic onto everybody else. The heavy use of social media makes this nearly impossible anyway so I thought I'd give it a shot.

Huntington's Disease (HD) is a neurodegenerative disorder that is genetically passed from parent to child. If a parent is a carrier, then the child has a 50% chance of becoming one as well. If the disease is in your genetics it is a matter of when, not if the disease will manifest.

HD robs people of everything they have. Twitches and shaking get more pronounced as memory and mental acuity starts to fade. Eventually the person loses all motor control and mental awareness and essentially disappears before your eyes. The length of this process can vary but the earlier it starts to manifest (typically in mid 30s), the faster it progresses. Everyone around him/her see the person they knew melt away in a very horrific way until nothing is left. It isnt a gradual aging process but a process that occurs in what should be the middle of life.

Me and my best friend.

Feel free to read more here: http://goo.gl/kbyafl. It is a horrific disease for everyone that is touches

Emily's grandmother had 4 sons, 3 of which were confirmed to have Huntington's Disease. The 4th (Emily's biological father) died in his 20's before HD was confirmed. Until recently we did not truly know if Emily was at risk or not. Earlier this year Emily's younger brother was diagnosed with HD, meaning Emily's father indeed was a carrier: She officially has a 50% chance of having HD. While that is difficult enough, it also means our children have an increased likelihood of carrying the gene.

Anyone who knows my wife knows her need to be in control of the situations. This has mostly come from having this impending disease hang over her head for her entire adult life. She stays up nights, pacing back and forth worrying about what will happen if she does indeed have HD. How will she handle it? How will I handle it? How will we take care of the kids? When would she stop recognizing me and the kids? How would I explain that to them?  HD encapsulates her biggest fears into one horrible potential reality of losing herself and all control.

The most important ladies in my life.

Despite always knowing the risks of having HD in our family, the reality of the possibility hit me the other day. As dramatic as it sounds, it is possible that I would watch my wife and my children suffer and die from the same disease. Each of the most important people in my life could deteriorate to a point where they can't take of themselves and have no idea who that "stranger" is that keeps helping them. The most important role I can fill if my family has HD is emotional support and eventually the disease will even steal that from me. I would be helpless to to help those that mean the most to me and it breaks my heart in so many ways. I can't handle that thought.

I hope that Emily wins that 50/50 gamble and we will continue to live our lives as if she did. We decided early on in our marriage to not let that hang over us. However we know the possibility is there that Emily has HD and there just isn't enough known about the disease at this point to hope for a sudden cure. We have read of recent breakthroughs that give us hope that a cure could come one day, but know a lot of money is needed to continue the effort.

The best smile in the world.

Most of Huntington's research is directly tied to other things and/or is privately funded. Without our help, any or all progress will be probably accidental or slow growing. I will never give up on helping fund this research because of its personal importance.

It hurts to think a cure may not come in time to help Emily if she does indeed have it. It agonizes me to think a cure may not come in time to help my kids. I will do anything I can to help stop that possibility from happening. I will never stop fighting for them. It is all I can do.

A little me, for good or bad.

This post is not meant to try and manipulate anyone into donating, there are many worthy causes out there that are personal to many people. I just wanted people to know why I am so vocal about it. Wouldn't you be?