LANSING, MI -- Dawn (Hatter) Perry’s mother had Huntington’s Disease. It is a fatal genetic disorder with no cure.
She said that looking back she really did not have a childhood. She had one friend whose parents knew her mother, Harriette, was ill.
“Many children were not allowed to play with us because their parents did not understand the disease and they accused my mother of being a drunk. I was made fun of all the time by other children because of this,” said Perry.
Her father, Wayne, was a press repairman who had to travel a lot for his job, which caused many of the normal household responsibilities to fall on Dawn and her brother Kevin Hatter. At a young age, she knew how to cook, do laundry, keep house and help her mother with hygiene at a very young age. This is common with most children who have parents with illnesses that are not understood by the general population.
Perry said, “I was 7 or 8 years of age when I asked my father what was wrong with my mom. I wanted to know why she would get so mad at us and why she had trouble walking and talking. It was then that he told me she had Huntington’s Disease. From that point on it was a common word in our household.”
At that same age, Dawn’s father tried to explain that she was at risk for the same disease. As a family, they were very active in the organization Committee to Combat Huntington’s Disease . On weekends during the summer, they would go to local stores and sell raffle tickets to raise money for research in hopes there would be a cure before they were old enough to suffer from the same disease.
Perry said, “At that time Huntington’s Disease was referred to as a closet disease, many did not discuss it because it was embarrassing, I remember being stared at a lot when I was with my mom, you could tell people were talking about her. Growing up with Huntington’s Disease in your family everyone is affected, knowing that this could be your fate is scary. “
She is now the coordinator of the 4th Annual Lansing Area Team Hope Walk for Huntington’s Disease. She is 52 years old and for long as she can remember her family has been affected for many generations by the disease.
Perry said, “Not many people know about the devastation that death can cause young people. Kevin and I were very young when our mother passed away at the age of 34 from Huntington’s Disease.”
The symptoms are broken down into three categories: behavioral, cognitive and movement.
It affects your short term memory, balance, giving you uncontrolled movements. It also gives you mood swings and interrupts your ability to stay focused.
Perry said, “My last memory of my mother was visiting her in a nursing care facility about three months before she passed, she did not know who I was. Our father was very active with an organization called Committee to Combat Huntington’s Disease and he kept my brother and I active as well. Our fathers wish was that a cure would be found before my brother or I would have to face this dreadful disease again in our lives.”
Perry’s mother was one of four children – three of them inherited Huntington’s Disease.
Perry said, “As I watched each of them succumb to this horrible disease, I continued to remain hopeful for my generation which is six kids, including myself. I have since watched three cousins and my only sibling Kevin, struggle and suffer with this horrific disease. It is devastating watching the pain of those who have passed away and those they leave behind.”
Broken Family Ties
Perry’s brother, Kevin passed away at the age of 47. He spent the last five years of his life in a nursing home.
Perry’s daughter, Lindsey Smith, has dealt with her Uncle Kevin’s illness since she was 6-years-old.
Smith said, “I first noticed the twitching movements, subtle depression and my Uncle Kevin’s mood swings. As a young girl, I became familiar with hospitals, nursing homes and the general field of medicine all too soon.”
For my family, the official diagnosis of Huntington’s Disease came as no surprise. Although Smith had heard her mother talk about it before, she was still too young to comprehend the horror of the disease.
Smith said, “As his symptoms progressed over the next ten years, my knowledge and curiosity grew with each weekly visit to the nursing home. At first we came to keep him sane, discussing medications and ways to control his anger with the nurses and doctors; but as time went on, our visits became more serious.”
As a teenager in high school, Smith spent Saturday afternoons feeding Uncle Kevin and taking him for walks outside in his wheelchair. Even though each visit was different from the last, she always remembered leaving with the same frustrations. She wanted to know what causes this disease to happen? And why can’t any of it be fixed?
Watching the slow progression of the cureless disease that caused the eventual death of her uncle is something that Smith will never forget, but from years of experience with Huntington’s Disease she developed a deep personal interest in medicine.
No Cure Yet
Huntington’s Disease is one of the most researched and studied neurological and hereditary diseases in the world. 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 during their prime working years and has no cure.
Huntington’s Disease is known as the quintessential family disease because every child of a parent with it has a 50/50 chance of carrying the faulty gene. Many describe the symptoms as having Amyotrophic Lateral Sclerosis, Parkinson’s and Alzheimer’s simultaneously. Huntington’s Disease is triggered by one mutated gene.
Today, there are over 900 families in Michigan and over 30,000 people throughout the United States who suffer with this debilitating, life-taking malady. It is estimated an additional 250,000 people are at risk for inheriting the mutated form of the gene. Most people have never heard of Huntington’s Disease as it probably does not affect their family.
Perry would like to change that by making more people aware of the disease and by supporting families throughout the United States.
"We have no Lou Gehrig as an advocate for us (Amyotrophic Lateral Sclerosis or Lou Gehrig’s Disease), no Michael J. Fox (Parkinson’s Disease), or Glen Campbell (Alzheimer’s Disease), yet each of those neurological diseases are very similar to Huntington”s Disease: they all affect a portion of the brain causing premature death. All of those diseases are well known. Yet, the research discoveries in Huntington’s Disease may in fact help to find a treatment for each of them." says Dave Hodgson – Co-Chair of the Turn Chicago Blue campaign and former volunteer for the Illinois Huntington's Disease Society of America Board.
Huntington's Disease Society of America was founded in 1968 by Marjorie Guthrie, the wife of legendary folk singer Woody Guthrie. Woody died from complications of the disease in 1967 when he was only 55 years old. The Guthrie family legacy lives on at the society to this day.
The Huntington’s Disease Society of America is the premier nonprofit organization dedicated to improving the lives of everyone affected by Huntington’s Disease, from community services and education to advocacy and research. It is the world’s leader in providing help for today, hope for tomorrow for people with Huntington’s Disease and their families.
According to the website, www.hdsa.org, in 1993, researchers identified the gene that causes Huntington’s Disease. Since then, research has moved quickly towards developing treatments and, ultimately, a cure.
Perry said, “I have cousins, nieces and nephews who are all at risk to inherit this disease. I wish and pray like my father that we find a cure for this disease before I leave this earth.”
The 4th Annual Lansing Team Hope Walk is Saturday, September 10, 2016 at Sharp Park located at 1401 Elmwood Road, Lansing, MI. The check in time is 9:00 am to 10 am. The Fun Walk is $15.00 for adults and for children it is $5.00. The 5K Run/Walk costs $25.00. Register at www.HDSA.org/THWlansing.
Perry said, “I am reaching out to you looking for help to educate, create awareness and raise funds to help families affected in our community and in the Great Lakes Region and beyond.”
If you are interested in helping to create awareness, or have any questions please contact Dawn Perry at email@example.com or by phone at 517-202-8558 (cell) or 517-323-2876 (home).
Printed in the August 21, 2016 - September 4, 2016 edition