Our Story

Next month, we will be hosting the first annual Team Hope Walk to benefit the Huntington's Disease society of America.  Kenny and I feel blessed to have been able to be a part of this effort to raise funds for the organization that has provided us with so much support in the past year.

Thirty-one years ago, we adopted our son, Lacy Alan when he was three years old.   Lacy had been diagnosed with autism and developmental delay, but that did not deter us from embracing him as our son.  We knew we were meant to be together.

Huntington's Disease ran in Lacy's birth family.  His maternal grandmother had died from the complications common with HD.  When Lacy was young, we asked our doctor if we should have him tested.  He advised against it.  His rationale - which I believe was sound - was that since there was no treatment and no cure, there was truly no benefit to the testing.  We are so thankful we took his advice.

Over the years our son has overcome so many challenges.  He learned to read and write and to express himself clearly.  Lacy and Kenny spent hours pouring over maps, especially the highway and interstate maps.  Lacy memorized the state and national highway system.  He planned trips for us and was able to recite which states each highway traversed.  He memorized worship songs, knows who wrote the songs, and when they were published.   To this day he holds "no repeat weekends" as he sings his songs to the Lord.  He loved to read his picture Bible, and went through at least one Bible a year.

Lacy has always had a very strong faith.  He would often talk frankly about his or another person's disability and state matter-of-factly "When Jesus comes back, I won't have that problem any more."  We have been blessed time and time again by Lacy's strong faith.

We moved our son to a group home in1997.  It was the best decision we ever made for him.  He thrived there, became independent, and developed his own likes and dislikes.  Three years ago, we moved him to a waiver program in our community where he was able to live very independently in an apartment with staff support.  We occasionally thought about HD, but always put it in the back of our minds.  We would not worry.  Even when we learned that his birth mother had the disease, we still did not seriously consider the possibility for Lacy.

Looking back, we can now see the subtle changes that began in 2001 when our son was 23.  Lacy's personality began to change.  He was not as easy going, nor was he as interested in working or being part of a social group.  He suffered a grand-mal seizure in March of that year, and his psychologist believed his behavioral changes were the "lead up" to the seizure.   The changes continued.  In the summer of 2010, staff at his new facility thought they noticed small seizures and we were referred to a neurologist for assessment of his seizure medication, to see if we needed to try something new.  I sat in the doctor's office filling out forms, listing symptoms:  strange writhing movements that seemed to be seizures; personality changes; loss of interest in reading, maps, video games; delusions and obsessions.

"Could it be Huntington's?" I asked the doctor.  Reluctantly, he agreed that it was possible.  And so it was that we sat in the neurologist's office on July 6, 2011 and had our worst fears confirmed.  Lacy tested positive for Huntington's Disease.

The year since has been very difficult.  Lacy's condition has deteriorated quite a bit.  He has had two hospitalizations for related health issues.  He has to have 24-hour care, and falls quite a bit now.  He experiences fatigue and has to sleep often.  He speaks more often to people he imagines are with him than he does to us.  We are sometimes ordered out of his apartment when he believes we are trying to hurt him.  Getting him to the doctor is a challenge since he regularly believes they have been arrested for trying to kill him.

For us, being able to organize this Team Hope Walk is a way for us to fight the "unbeatable foe" of HD.  We have met so many wonderful people through our support group and the HDSA website.  We will walk in memory of those we have lost to this disease.  We will walk in honor of those who fight the effects every day.  The money we raise on October 6 will go to support other families and will fund research that will one day finally find a cure.

If you are in Springdale on October 6, join us in raising money to benefit HDSA.  You'll find a link to the event on the Goff's Facebook Group (link on the right hand side of the page) and a direct link to the fundraising page below the Facebook link.


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