A Personal Experience Story
By Bunny Clark
Bunny, pictured, dying her hair blue & purple for Huntington Disease Awareness Month.
I am stepping out of my comfort zone here and it’s not easy. I would like to tell you why I decided Durham Region needed a Walk to Cure Huntington Disease.
I have been watching Huntington disease (HD) rob so many people who I love, and have loved, of their dignity and life for over thirty years.
I married in to a family whose mother gave birth to seventeen children. Little did she know that she carried the mutant Huntingtin gene, not Parkinson’s like they suspected. HD would quickly take away everything she ever knew as a normal life. I wish I had been able to meet her, I’ve heard she was an incredible woman before HD started to show its nasty face, but she passed away in 1973, a year before I met my future husband, Duncan. Each one of her children had a 50/50 chance of inheriting the gene.
The first one was my brother-in-law Tom. He was bright, funny and a really nice guy. It was so hard for my husband Duncan and one of his brothers help two police officers force Tom into a cruiser, totally against his will, screaming and fighting. He couldn’t stay with us any longer so they were taking him to a home where he could get 24-hour care. That scene is still so fresh in my mind and I’m sure it scarred his brothers for life.
Tom lost everything, including dignity. He died at 53.
By that time, my beautiful sister-in-law Bonnie was in a long term care facility. HD takes such a toll on family and many eventually have to have 24-hour care that only LTC facilities can provide. Her three kids were her life. She was 54 when she passed away.
Duncan was sure he had inherited the gene as well but at that time there was no conclusive test until after death to confirm HD. He struggled while watching his mother and siblings one by one develop symptoms. I refused to believe he had it because by then we had four beautiful children together. I just couldn’t imagine that beast showing its face in my kids’ lives. Our marriage had been rocky for many years and we ended up separating. One year later he took his own life. He was 38.
June was a smart, kind and caring sister with a heart of gold. She and her husband John took in many of her younger siblings after her mother could no longer care for them. June was cared for with so much love and compassion by her loving husband and children but when it became too difficult, she entered a long term care facility. I remember visiting her there in the beginning. She was so upset and all she wanted was to go back to her home. It was heart wrenching to hear plead over and over. Her amazing husband soon moved in with her and she was finally content. He showered her with love until she passed away at 67.
Then there was Kathy. She could always be recognized by her unmistakable laugh. She was happy and she had a big, beautiful smile to match her big, beautiful heart. She babysat my children for me. She spent many of her last years in a LTC too. She was 66.
Tim is in a LTC facility now. He’s been there for about five years. He’s 65.
Bonny’s son Roy entered LTC when he was 49. I am so grateful to have been a part of his last four years. It was a struggle trying to educate health care people. He was put in restraints numerous times at the hospitals; screaming, yelling, it was heartbreaking. So many caregivers knew nothing about HD, just that they’d heard of it. But we did have many happy times together too. For that I will be forever grateful. He passed away at 53.
Roy’s sister is showing symptoms now too.
Then there is my family, my children. My amazing children have experienced so much pain and heartbreak since such young ages. They watched their dad struggle with HD. Even though they were very young, I know that it’s had a huge impact on their lives. They watched too many aunts, uncles, and now a cousin, die from HD. My oldest of four was only 13 when their father took his own life. But in spite of it all, they have grown to be strong, loving, kind people. They’ve survived many challenges and will get through more challenges that life has for them. They are all individuals and have their own personal way of dealing with this monster that is hanging around us for so many years. We share a true strong bond and I am so grateful for the love and support we have for each other.
I cannot begin to describe the pain I felt in my heart the day my beautiful daughter Amanda, at the age of 18, phoned me with her blood test results. She had indeed inherited the Huntingtin gene from her father. I felt like my world shattered at that moment. She doesn’t know this, but I think I cried for a week, maybe longer. I tried to be positive. I said well, I’m sure there will be a cure by the time you would have to worry about it. She is now 34 and at the age where symptoms begin to manifest, and there is still no cure. She chose to not have any children. There is hope though – much research is being done, and breakthroughs are being made.
My two boys Rob and Corey were tested, and the grueling wait for their results was so intense I cannot even explain how I felt as I was waiting. I was so afraid. I know it was even worse for each of them. When their results showed negative, I was so happy for them. I still cried, knowing they would be okay and my two grandsons would not have to go through what their dad has. But it’s bittersweet because even though they are okay, they live with knowing what potentially lies ahead for their sister until a cure is found. That’s tough.
My middle son, Mat, has not been tested. It’s his choice and a choice only he can make. Either way, it will affect his life.
I cherish the love we share in my family and I am incredibly proud of each and every one of them. Even with this dark cloud hanging around us. As their mom, the pain I feel in my heart for them is overwhelming at times. I love my children and the grandchildren they have given me. I feel truly blessed that I was chosen to give birth to them and share in their lives. This challenge has given our family the strength to tackle the difficulties life can throw at us. But it still makes me sad that the kisses that used to heal all their childhood wounds can’t make the pain go away like it did when my children were little. I thank them for their support for the Walk to Cure Huntington Disease we hold each year.
So please help us raise awareness and be a part of the cure by coming to Durham Regions 3rd Annual Walk to Cure Huntington Disease on Sunday May 29. Or please make a donation, in anyone’s name. It doesn’t matter as long as it goes to the Durham walk.
At this time in our family alone there are 48 grandchildren, 38 great grandchildren and 3 great, great grandchildren. We would all be most grateful for your continued support. With your help we will make a difference and our voices will be heard.
I am eternally grateful to everyone who has helped to make the Durham Walk to Cure a success! Thank you!
Bunny