2nd Annual HDSA Utah Team Hope Walk

This past Saturday was the 2nd annual HDSA Utah Team Hope Walk in West Jordan and it went great! Thanks to all the contributions, Purdy Strong (our team) finished in 2nd place with $1800 in donations. Overall roughly $11,500 was raised (not counting donations made the day of the event and the silent auction).

To help us celebrate being part of team Purdy Strong, Emily and I designed signs for each family member. Here are a few shots of those signs.

This was the most popular sign in our group. Sloane and her sign were even featured on the HDSA Utah Affiliate facebook page.  After all that effort I probably could have hidden the tape a bit better.

The best part of this picture is that you can't see Sloane. I wonder if anyone saw this and thought my dad was being unusually supportive of the cause.

My mom holding Seth's "HD ain't got nothing on me. I'm Purdy Strong" sign. He walked great with her for almost the entire walk. He loved seeing his Nana, especially since she watched him for several hours during the event and saved our sanity!

There is the handsome me with my Purdy Strong sign. Also visible are my dad, Thayne, Janet, Wayne, Becca and Kaylyn.

The short walk around Veterans Park in West Jordan went very well with several hundred people participating. We had a great turnout for our team and many more people who were unable to attend but supported us in spirit.

In addition to the walk, there was a charity auction and raffle. While the raffle took WAAAAAAAY too long to get through, we did walk away from the charity auction with a sweet Great Harvest gift basket and a scrapbooking basket from Stamp It Up. While the bread was more exciting for me, Emily practically drooled all over the scrapbooking stuff.

Thanks again to everyone who supported us in our first attempt at fundraising. It was a ton of fun and helped us contribute towards something we believe strongly in. Below are some assorted pictures from the event!

Team Purdy Strong sans Kara and Andy (Kara was taking the picture.)
Back row from left to right: Jon, Joy, Becca, Clint, Wayne, Kaylyn, Janet, Paul. Front Row: Matthew, Briana, Seth, Carolyn, Thayne, Sloane, Emily.
A bit of a rough and tumble bunch.

The Williams Crew wearing a hint of blue to show their support for BYU on Rivalry day. Just kidding guys! Sloane at least gave them their Utah red.



Emily, Kara, her horse (I mean dog) Andy ,and Seth. We should have brought a saddle for Andy so Seth could sneak a ride.

My first two roommates as a married man. Confused? Lets just say one was my movie wife and one was my legal wife. Thanks Becca!

By the end of the event, Sloane was done. I think my dad was happy for the excuse to sit down.

Clint and Emily! Fundraising masters!



Longtime family friend Joy, bright pink Kaylyn and Emily. Fearsome threesome.
 

Emily here....

I am overwhelmed by the support I received on this event.  It brings tears to my eyes to think of the many who donated their time (early on a Saturday morning!) and/or money to this cause.  I truly appreciated the emotional support as well.  So many reached out to me with words of encouragement and love.  I love you all so very much!

I hate this disease.  I truly hate the fear it brings into my daily life and the potential burden it would leave on my wonderful and ever-patient husband if/when I develop this disease.  I hope a cure will be found!  Until then, let's stay Purdy Strong!  :)

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?

Seth's First Soccer Game

I could have easily called this "Emily's Saturday Workout" because I think she ran the most of anyone on the field. Most parents look forward to the day when their kids can start sports and we were not different. We expected tears and hissy fits but we underestimated Seth's capacity to melt down....greatly. 

 

We were off to a rough start when the league provided Seth with a parka instead of a jersey. Add in the need to wear shinguards and high socks for the first time and you get one very unhappy little boy. I actually started out on the field with him but after 5 minutes of me simply hugging him, Emily tapped in.

 

Emily got Seth's feet to touch grass. Mom 1 - Dad 0.

While Emily was able to get Seth (after a few minutes of coaxing) to actually walk around the field with her, he wasn't thrilled by it. In fact she had to carry his personal soccer ball around as a bribe. Bringing his incorrectly sized bright orange ball was just one of many bad Dad calculations on the day. 



That kid with the ball could fly (for a 3 or 4 year old). He played a nice European style, complete with an impressively developed flopping technique. He was the match All Star. Notice Emily eyeing the ball intently. She was sick of that kid burning her, I mean Seth....she wants that ball.

Emily was fantastic with him, always being positive and encouraging. Seth was beginning to get more and more comfortable playing and even decided to go for the ball once. Unfortunately he chose the moment when he was outnumbered 3 to 1 with charging 4 year olds coming at him.



This shot doesn't bode well for Seth. Even Emily is kind of steering clear of the collision that is coming.

He got leveled. Destroyed. Anihilated. He put himself out there for 1 play and he discovered just how small he was compared to everyone else.

The best part of that situation was the support the other parents were trying to give me as Seth struggled to enjoy the game. Each had their own story of the difficulty of youth sports and promised me it would get better. As Seth decided to go for the ball, they all got really excited and looked at me with huge smiles on their faces. Then Seth was flattened and you heard a collective groan. One parent managed to say "That was not the best moment for him to go for the ball". After that, nobody said anything to me and tried to pretend I wasn't there. It was an understandable awkward situation.

This is my favorite shot. Why? Because it is blurred....meaning Seth was moving. I wish I could have done a video of this because he made it about 5 feet before he stopped and panicked when he couldn't find Emily.

After watching a bit of the game on the sideline Seth was able to go back on the field. While he stuck close to Emily and made her carry him most of the time, he did have a moment or two were he was confident enough to wander after the ball. I suspect a few of the times the other kids around Emily and Seth simply pushed between them and forced them apart.

Seth was more worried about someone trying to steal his mommy than where the ball went. Notice the size difference between Seth (3rd from the right not including Emily) and the 14 year old pretending to be 4 standing right next to him.

One thing about Seth is that when he reaches his limit, it isnt a gradual decline. He just stops. He was spent, emotionally and physically. Apparently being held by mommy while walking around the field just wore him out and he went down for the count.



And he was done. Not just tired or grouchy....done. He could have atleast collapsed about 5 feet to their left so that he could be protecting the goal. He hasnt quite developed that sports sense yet, it will come.

It was a pretty rough first game. Everyone had comforted us ahead of time, saying that all kids that age mostly cried and didn't want to be there. Nope, just Seth and 1 other kid. That is ok though. He will get used to it and hopefully start having some fun. If not, atleast mommy and daddy will get a good Saturday Morning workout and some orange wedges.