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By Matthew Santamaria (msantamaria@hdsa.org)

Throughout high school, volleyball was Jamie Sorum’s life. She started playing in fourth grade and played throughout high school.

Jamie played competitive volleyball for more than nine years which included year-round practices during the summer, and volleyball camp. In her junior year, she moved to Rapid City, South Dakota. She also played other sports and had a lot of success.

However, success did not lead to happiness. She started to develop mood swings.

“One night, I was depressed and swallowed a bottle of Tylenol, thought I would go to sleep and wake up in heaven,” Jaime explains. “During the middle of that night, I woke up, I realized I wanted live, got up, and went to tell my parents what I had done. My dad rushed me to the Emergency room where I spent the night drinking charcoal to absorb the Tylenol in my system, and throwing up.”

She was then diagnosed with Bipolar Type One as she suffered with depression and mood swings for many years. She tried different counselors and medicine but nothing was working.

In 2002, she graduated high school and went to college with a degree in English. Her dream was to be a journalist and travel the world to gather stories. Jamie wanted to be an author because of her love for writing as it can be therapeutic for some.

College did not last as she left in her first semester because of mood swings and depression. She then came home and took one class at a time as her doctor was trying different medication to stabilize her.

Four years later, her hands started to shake and she was losing her balance at age twenty-five years old.

“I kept going to college,” Jamie explains. “I remember the last class I took was a drama class. I was acting out my final and my hands were cramping up and I fell in class. It was becoming harder and harder to do all of the normal things that I used to do. That was the last time I took a class it was the first time I realized that I was not going to be a writer or a journalist, which were my gifts.”

Jamie was even pulled over by the police because she was driving erratically. She tried to convince them that he was not drinking but had trouble walking in a straight line and her impaired movements were affecting her driving.

As it worsened, the family went to see a doctor that led them to a neurologist. She was then suggested to take a blood test where it was revealed that she has the gene that causes Huntington’s disease (HD). This is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities usually during their prime working years and has no cure.

Before the diagnosis, her mother needed to find Jamie’s medical history because Jamie is adopted. Her birth mother never signed a birth registry as she was unable to be found. Once they settled this in court, her mother received word that Jamie’s birth mother was living in a nursing home battling HD.

“My birth mother’s name was Angie, she came from a family of people struggling with Huntington’s chorea,” said Jamie. “I am Angie’s first child, she placed me for adoption and eventually had 4 other children, they did not know about me.”

Jamie would learn that she inherited this disease from her birth mother. Each child of a parent with HD has a 50/50 chance of inheriting the faulty gene that causes Huntington’s disease.

The disease explained what Jamie has been going through in high school and college. The symptoms of Huntington’s disease are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously. Symptoms include personality changes, impaired judgement, involuntary movements, slurred speech, and significant weight loss.

HD led to Jamie meeting her Angie for the first time. Her family drove from South Dakota to Indiana to meet the birth family. They could not get over how much Jamie looks like Angie. Jamie always wears red lipstick, a hat, and loves swimming with dolphins… just like her birth mother.

“That moment and day we had together will remain with me the rest of my life,” Jamie explains. “I had my first family picture taken with me and my siblings. Of everyone I am the oldest, which makes my family a lot larger than it was before. The whole family was full of smiles and hugs and they were happy to see me despite the tragic circumstances.”

Four months after Jamie met her birth mother, Angie passed away due to complications from HD.

“I want to tell you how important it has been in my life to meet my birth family, to meet people who have my characteristics…it has given me a lot of peace. My search is over! I do think it was probably her dying wish to meet me. I feel it is a miracle that I got to meet her. Because of the disease, I was able to meet my birth mother which was a dream of mine. If these are the cards I have been dealt. I am at peace with it.”

However, Jamie’s life almost ended after a car accident. Her last day of driving.

“It was raining and I was at the bottom of the canyon,” said Jamie. “No one would have seen me down there so I knew I had to get out of my car and somehow crawl out of the canyon. It was long and difficult as I dragged myself up the cliff. When I got to the top, I was covered with mud from head to toe.”

Through this experience, she would hear a verse from 2 Corinthians 12:7-10 that gave her a new perspective on life: “I had this thorn and I couldn’t get rid of it, even though I prayed and prayed and prayed, the Lord said to me, My grace is enough; it’s all you need. My strength comes into its own in your weakness.”

“I quit focusing on the handicap and began appreciating the gift,” Jamie explains. “It was a case of Christ’s strength moving in on my weakness. Now I take limitations in stride, and with good cheer, these limitations that cut me down to size—abuse, accidents, opposition, bad breaks. I just let Christ take over! And so the weaker I get, the stronger I become.”

When anyone asks how she is doing, Jamie has the same answer.

“I tell them I am doing well, that each day is a gift to me from God. I tell them that every morning I wake up and thank God for another day. I have my quiet time and I ask him for healing in my heart, mind, body, and soul.”

Jamie is not giving up and fighting.

“You see I believe God can heal me. Whether I am healed here on earth or healed in heaven, I trust that God has a divine plan for me. I have accepted the thorn he has given me and I know that my healing can only come through God’s grace.”

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Huntington’s disease is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities usually during their prime working years and has no cure. Each child of a parent with HD has a 50/50 chance of inheriting the faulty gene that causes Huntington’s disease. Today, there are approximately 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease. The symptoms of Huntington’s disease are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously.

The Huntington’s Disease Society of America is the premier nonprofit organization dedicated to improving the lives of everyone affected by HD. From community services and education to advocacy and research, HDSA is the world’s leader in providing help for today and hope for tomorrow for people with HD and their families.

To learn more about Huntington’s disease and the work of the Huntington’s Disease Society of America, visit www.HDSA.org or call 1(800)345-HDSA.

​This is a story featuring a personal experience with Huntington’s disease. If you would like to have your story told please contact Matthew Santamaria at msantamaria@hdsa.org.