Huntington’s Chorea Disease, True Hope in the Midst of Hopelessness

This story is a little bit long; PLEASE do not let that stop you from reading it.  I promise it is POWERFUL!

Even though our faith had become lukewarm and complacent, life was still going good for us by the world's standards.  In spite of our good life, we were still only going through the religious motions.  I really did not have a healthy dependence on God. There really was not a need for dependence since things were going pretty good, so I thought.  In my mind, I pretty much had things under control by my own power and will. 

I honestly believe that this is the problem with most Christians; life seems good so we forget that we really need God.  Truth is we do not have control as much as we think we do.  Every moment we are one second, one heartbeat, and one breath closer to death.  The strongest Christians I know are the ones who have had their days numbered.  The days are numbered by cancer or some other incurable disease.  It seems when the end of life has become imminent and foreseeable, a sense of urgency arises.  It is then that we have hit rock bottom and realize; we do not have control.  The only hope we have left is God and His mercy.  Family and friends cannot help us, doctors and medicine cannot heal us, and we cannot save ourselves. 

Our family has been given a “hopeless diagnosis.”  My wife Carri and I had been going to the Huntington’s Disease Society of America, (HDSA) Center for Excellence in Saint Louis Missouri at Barnes Jewish Hospital.  For three months, we had been traveling to Saint Louis for a series of hospital visits.   Our first visit, we both had to undergo psychological evaluation.  Our second visit we were psychologically evaluated again and blood tests were drawn. It was during our final visit that we were once again psychologically evaluated to determine if we were mentally and emotionally stable enough to receive the results of the blood test.   The doctor and the social worker both agreed that Carri and I were mentally, emotionally and psychologically stable enough to receive the results of Carri’s blood test.

December 19, 2005 we received our “hopeless diagnosis.” Carri tested positive for the genetic disease Huntington's Chorea.  We sat together hand in hand with tears flowing from our eyes as we heard the doctor say, "I am so sorry, Carri is positive for Huntington's disease."  I could not help but notice that both the doctor and our social worker had tears in their eyes as well. 

For Huntington's Chorea, there is no cure, no medicine, and no treatment.  Within this genetic disease itself, there is no hope.  If you have the gene, you will have the disease.  Each of your children stands a 50% risk of carrying the gene as well.  We have four children.  If they have the gene, they will have the disease also.  Statistically two of our four children have Huntington’s disease and there is absolutely nothing we can do about it.

You may be asking “What makes Huntington's disease (HD) hopeless?”  It is not just the fact that there is no treatment or cure, it is what the disease does that makes it so bad.  The symptoms of Huntington's are similar to Alzheimer's, Parkinson's, and psychosis combined.  HD destroys the brains pleasure centers and its positive capabilities such as self-control, happiness, joy, peace, patience, kindness, gentleness and such.  The victim is left with anger, rage, depression, hate, frustration, and loss of cognitive abilities, loss of self-control, and all the other negative things you can imagine.  Those ravaged by this disease also lose their ability to physically control their own bodies.  The length of time that it takes from the onset to death can take several years.  That is if suicide or murder does not come first.   Huntington’s disease victims have the highest rates of murder and suicide.  This does not just solely occur with the carriers of the gene, it occurs amongst loved ones as well.  The physical, emotional, and psychological impact is devastating.

As if that is not enough, HD destroys families, marriages, friendships, and jobs.  It ruins anything and everything.  As I said, the victim's brain is robed of everything positive and left with only the negative.  Relationships become hostile and typically fall apart.  Families turn on one another, marriages fail, friends leave, and employers fire.  Most caregivers cannot stand to work with Huntington's patients because of the physical and verbal violence associated with it.  I could go on and on about how bad it is and the numbers of lives that have been destroyed because of it.  I will not.  I hope that what I have said helps you understand how hopeless and grueling of a disease it is.

The first part of our four and a half hour ride home from Saint Louis was in complete silence.  Tears just flowed from both of our eyes.  We both had the thoughts going through our heads about how bleak and hopeless our future had become.  The “good life” did not matter anymore.  I remember thinking “How are we going to deal with and endure what was before us.”  Seriously, we were just given news that was worse than a death sentence.  It was like someone saying "I have bad news and no good news, your lives are about to be destroyed and your suffering is going to last for years.  It is going to affect your marriage, your children, your friends, your job, your neighbors, your finances, and well pretty much everything.  And by the way, there is no hope and there is nothing you or anyone else can do about it, welcome to hell."

The silence finally broke after a couple hours.  Carri and I both agreed God was in control.  We knew we had two choices.  The first choice was to surrender to Huntington's disease letting our lives be destroyed and the other was to surrender it all to God.  I do not remember my exact words, but I know I have said this before, "Huntington's does not have to be a monster, and our God is bigger than this.  If God has allowed it, then He will be glorified through it if we are willing to surrender to Him." 

We could no longer live a lukewarm faith just simply going through the motions of religion being complacent with where we were in our relationship and dependence on God.  It was not going to work, not for this.  We prayed and that day we both made a covenant with God.  Our covenant was this, we surrender our all so that you can be glorified through us, let our lives be the proof and evidence of your love.  Use us to reach others so that they may come to know you as well.  We know that true hopelessness only exists apart from you. 

You see by the world's and by medical standards, our lives are without hope.  There is absolutely nothing anyone, any medicine, or any treatment can do.  Nothing can make any of it better or tolerable.  But by the grace of God, He can.  As I write this story, it has been nearly seven years since Carri was diagnosed with this dreaded disease.  In those years, God has taken us to places we never would have imagined.  I can honestly say that we are blessed because of Huntington’s Chorea disease.  Sure we have our hard times and challenges, but God has magnified Himself in and through us in ways I had never thought possible.  Spiritually, we both have been on fire since that day.  God has given us a passion and a hope that just refuses to burn out.  God has taken our hopeless curse and turned it into a blessing.  He is showing the world who He really is because of it.  In the days to come I will be sharing more about what God has done since that time. 

Please allow God to use us to encourage you, not matter what you are facing.  His HOPE is real and true.  Feel free to message me or even send an email.  Our desire is that we can share with others what God has done for us so that they will find the same living hope we have. 

the picture is Carri sharing her testimony about Huntington's disease in Nicaragua, 2011.

John 9:3 "Neither this man nor his parents sinned," said Jesus, "but this happened so that the work of God might be displayed in his life.

May My Life Be the Proof and Evidence of Christ’s Love!

Our Fourth Baby

After Brenton was born we were living the American dream. I was managing an ambulance service and making good money. We had the 2.5 kids (actually 3), owned our own home on 2 acres, drove two cars, and we took vacations at least twice a year. Carri did not have to work and we were not living check to check. Things were looking up for us. We were truly blessed. Overall, everyone was healthy and happy.

Just when we thought we were blessed to the max, we found out Carri was pregnant again. We were so excited. We absolutely loved having our children and being able to raise them in a Christian home. God must have thought a lot of us as parents. He was allowing us to have 4 children, and all the means we needed to provide for them.

Christmas 1998, we decided it was time to share the awesome news with family. Carri's mom Sandy and her dad were visiting from Colorado. We thought that the timing was perfect; there could be no better gift than to announce another grand-baby was on he way. We bought Sandy a necklace with four children on it as a gift and to surprise her. That was going to be our special way of letting her know. We just knew she was going to be excited. Sandy loved babies.

Christmas day 1998, we gave Carri's mom her present, that special surprise necklace. We were all gathered around the tree just waiting for the surprise on her face. We could hardly stand it, we were so excited. Sandy opened the box and was speechless. One of us said "surprise! You are getting another grand-baby." The look on her face quickly turned to anger. Sandy was furious.

You are probably wondering why she was so upset. She was upset, because Sandy had a genetic disease called Huntington's chorea. Huntington's is one of the most monstrous of all diseases. It literally ruins lives and destroys families. The children of Huntington's victims have a 50% Chance of having the disease themselves. I will tell more about Huntington's disease later in another story. Understand this; Sandy knew statistically two of her four grandchildren would most likely have the disease that was now plaguing her body. In her mind, we were fools for bringing children into this world only to have such a high risk of suffering such a devastating and monstrous disease.

Cassidy was born in august of 1999. Not without complication though. To make a long story short, there were problems with the labor because Cassidy was breach. We prayed, and she was delivered by an emergency c-section. She was healthy but a rather cranky baby to say the least.

As time went on, Sandy fell quickly and madly in love with her newest grandchild. Like I said, Sandy loved babies. We quickly learned that God used Cassidy to keep Sandy going. She loved all her grandchildren and even said she could not have imagined life with any of them not being there.

I shared this part of our lives for a couple reasons. We have a genetic disease hanging over our heads. This disease ruins lives and destroys families. If we had lived in fear, we would not have had the four amazing children that we have today. In fact, the doctor of our first pregnancy suggested that we have genetic testing done. If the testing came back positive, then he suggested that we have an abortion. Abortion was never, I repeat never an option for us. God does not make mistakes.

It has been very evident that God brought each one of our children into this world for very special reasons. Each one has made an impact for God in their lives and the lives of others. I believe that our children are the proof and evidence of God's love. If we had surrendered to fear, then we would have missed some of God's greatest blessings.

The picture is of our children from 2004. They are much bigger now. They are on the beach of the Pacific Coast of Northern California.

Matthew 6:27, 34 Who of you by worrying can add a single hour to his life ? 34 Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.

May my life be the proof and evidence of Christ's love!