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Content © 1999-2009
|As told by Pat Pillis...
My inability to have a child had left me feeling somehow empty. No matter what I did have in life, there was always the lingering sadness that I would not be a mother. Besides that loss, my first husband and I were both alcoholics, though neither one of us acknowledged our sickness. Our drinking made our lives tumultuous and things were less than pretty in our marriage. In the spring of 1981, feeling very empty, I went on what I call my spiritual quest. I now know I was looking for God; I guess Id been doing that for years, but just hadnt realized it. I was truly looking for love in all the wrong places. I traveled extensively by myself and when I returned home to Lake Placid, NY, began visiting Christian churches. In September of 1981, I asked Jesus Christ into my heart as my savior. I knew I was saved, but didn't really want to change my lifestyle. Other than church attendance, I continued my less than Christian ways.
In the midst of getting on with my life, my husband and I got a phone call that there were three boys whose parents were both terminally ill. The agency was desperately seeking a new home for the children. At first it sounded overwhelming, but we decided to go to Washington County, NY, where the boys were in foster care and learn more about the children. That was the first time we ever heard of Huntington's Disease. Their mother was unable to care for them because she was in the late stages of HD, and their father was dying from emphysema. We knew that the boys were at-risk, but we were also assured that most people did not get the disease until they were well into adulthood. I prayed as Id never prayed before, and the Lord seemed to say, "It's not their fault." I had asked my church family, beginning in January 1984, to pray for a baby for us. One Sunday in March of 1984, I brought all three boys to church and said, "Please stop praying."
Our new sons were ten, six and two and had been named Fred, Kevin, and Shane respectively. They had a fourth brother, Michael, who had been adopted out of the family before I met them. On the day they came home, my drinking progressed to being a daily occurrence. I had no idea how to take care of them, so I stuck my head in the ground with my bottle. They came with more baggage than I had realized. Even now I am still learning about how long we carry our baggage with us and how devastating it can be. I let them know that we each had a job. Their job was school and day care, and that was that.
On May 4, 1986, thanks to comments made by my oldest son, and being sick and tired of being sick and tired, I found my way into sobriety. By the grace of God, I am still sober today and that is a real trick, considering we are now looking at HD head on. My husband and drinking buddy was not thrilled about my sobriety, so a little over a year later, we separated and I kept the boys. We moved to Saranac Lake because Shane was having serious behavior problems and the school district was better able to care for special needs students. I believe that was the beginning of our family struggles with Huntingtons Disease.
While I fought to stay sober, and the boys worked on having normal lives, we put HD on the back burner. We visited the boys parents on occasion, eventually attending their funerals. Fred, who had been taught a physically violent way of dealing with life by his birth dad, ended up moving in with my ex-husband because of his violence and large size. At fourteen he was an angry six-foot-two-inch adolescent, compared to my five-foot-two-inch frame.
In 1989, social services contacted me because they had a baby that turned out to be my little Shannon. I had always dreamed of having a daughter, but had given up that hope when I became a single mother. I believe that God worked a miracle by bringing her into our lives. She was fourteen months old at the time, and here I was, a single mom, about to take on more. Of course people thought I was crazy, and maybe I was. But I also know I was blessed. Now I had four children and loved them all dearly, so life continued with HD still on the back burner.
In June 1990, I married my second husband, Paul Pillis. When I was divorced there were two things of which I was certain. I knew I would never have my little girl, and there was no man on this earth that was going to come along and marry me with all these not-so-easy kids. What I didn't realize, and still forget at times, is that I serve the God of the impossible. Kevin and Shane gave me away at our wedding, and so began another phase of life.
All went beautifully well until the summer of 1991, when Kevin decided, at age fourteen, to move in with his dad in Lake Placid. My heart was shattered, and it was a rocky time in our family life. He has since returned and lives part time with us and part time with his dad while he attends college. We have a great relationship now, but then it was very difficult.
During these years, Shane was diagnosed with Attention Deficit Hyperactive Disorder, put on Ritalin, and was always in special education classes. He was an excellent academic student, but behavior was always a problem with him. He was never mean, simply out of control and inappropriate. Three or four years ago, as he entered early adolescence, Shanes behavior started getting worse. We chalked some of it up to being a teenager. He was not maturing as other kids, and seemed to be losing the few friends he had. There were times when he was sexually inappropriate for his age as well. With each year he got worse, and finally I asked the doctors about the possibility of HD, but was told he was too young.
Then the stealing began. He broke into friends homes when they vacationed and started swearing uncontrollably when he was angry, which was often. My heart broke for him, and I did not react well. Paul and I started arguing about Shane's behavior. He insisted Shane had gone bad and needed to be turned over to the police, while I was convinced that he still had a sweet nature and was just sick.
Through it all, we visited neurologists, who said he just had a tic, and psychologists who said he was a tough case and unreachable. School districts tried to be supportive but were baffled by him, and pastors encouraged more prayer. When none of those strategies worked, we had him admitted to Four Winds Psychiatric Hospital in Saratoga Springs on March 10, 1997. A few days after he arrived, they gave him Depacote, and he went totally insane. They tried a number of other medications over the next few days but they all had the same effect. For eight days he was placed in isolation and was in a constant rage. It was terrifying. He was finally taken off all medication, and some sort of therapy began for him. We were running the roads between home and the hospital about two times each week. The expense of the two hour drive as well as loss of work time for my husband began to take a toll financially. But we knew Shane had to be the priority at this stage. In the midst of this, poor Shannon was in tears in my room with an innate knowledge that things at home would never be the same again.
In April, the psychiatrist at Four Winds, in conjunction with a neurologist from Glens Falls, finally diagnosed Shane with HD. Rivers of tears have been shed since that time. Although in my heart I had suspected HD for years, to hear the actual words was still a shock. Shane came home on April 18, knowing that he has this awful monster of a disease. Though he knows he is dying from it, he is in denial and believes he will live to be sixty, have children, and live a full life as a wealthy inventor. His sweet innocence helps him cope. As a family, we continue to draw closer to one another and to God, and we have had many healing prayer times together and with friends. I believe that Shane has been healed in his spirit and in his anger, though the HD rages on in its devastating way.
Kevin and Fred live under the shadow of their at-risk status. Kevin has begun the process of deciding whether to be tested, but Fred chooses not to be tested at this time. Their fourth brother, Michael, who was abandoned by his adoptive family when he started with the outrageous behavior in high school, is now twenty-two and has Huntingtons Disease. We are drawing him into our family circle as much as hell let us.
We all live with this disease the same way Paul and I live with alcoholism; one day at a time. We try not to project too much into the future, and Shane gets us laughing often when situations arise that could make us cry. We have started visiting long-term care facilities to help us choose an appropriate home for him, if it does become necessary to have him taken care of outside the home at some future date. We try not to plan when or why, but to trust God to let us know.
Shane had the genetic test recently, and with a CAG* repeat of sixty-four, it served to confirm the diagnosis and somewhat explain his early onset. We pray daily for a cure, and often donate to researchers so they can continue the fight. It may not come soon enough for our Shane, but it might for others out there who are presymptomatic like Kevin and Fred. People often ask me if I knew they were at-risk when I adopted them. Not only did I know, but I would do it again. It kept them together as brothers and I love them as my own. We need support of friends and family as never before, and I just pray that people don't reject Shane as his good looks deteriorate.
I believe that I was hand-picked to be a mother to my children
while learning valuable lessons at the same time. I have had many struggles before and
after the diagnosis of Huntingtons Disease. However, living a life with HD has
helped me to grow more trusting of God, more compassionate of others in need, and has
given me a larger capacity to love.
Used with permission; Faces of Huntington's by Carmen