I will begin my journey here – I was 10 years old and my brother was 7 when we were told our mother had to go into a nursing home. I thought to myself “A nursing home is for older people, my mom is only 39 years old” I knew she was sick, but at the time I didn’t know how sick. I was told she had Huntington’s Disease, but didn’t understand at the time what that meant. It wasn’t until I was around the age of 14 that I found out my mother’s destiny as well as for myself and my brother.I read an article in Discover magazine about Huntington’s Disease. What stuck out the most were these phrases; “fatal”, “no cure”, “offspring 50 chance of inheriting the disease”. My life from that moment on was changed forever. From the time my mother went into a nursing home at the age of 39 until the she died at the age of 47, my brother and I had to watch her get sick and sicker until she was no longer our mother.
My brother chose to be tested at the age of 30 when he found out he was going to be a father. He unfortunately tested positive – another moment in my life where going forward I was changed forever. My heart ached for my brother and for his unborn child. His daughter was tested in the womb and finally some good news – the gene did not pass down to his daughter – she was free from Huntington’s Disease.
My brother experienced many different symptoms than our mother did. He was impulsive, had problems with drugs and alcohol, the law, his marriage, day to day decisions, caring for himself, etc. At the age of 39 my brother had 9 criminal charges against him and he was facing jail time or he needed to be placed in a locked facility that could handle him and his disease. At this time he was deemed incompetent by the courts and I was his POA and HCP. I along with our family had wanted him in a facility years prior. We could see he wasn’t able to care for himself any longer, but he could not see this or was in denial, or most of all didn’t want to lose his independence, who could blame him.
My brother had always told me he would kill himself before Huntington’s Disease took over this life. A month before he entered a facility (at the age of 39) he tried to take his own life. He slit his wrists and took bottles of pills. Move forward a year from that attempt – while in a facility in Lee, MA he attempted to hang himself with phone cords and shoe laces. Thankfully a staff member found him in time to save his life. More forward almost a year later – March 7, 2018 while a patient at Western Mass Hospital in Westfield, MA he jumped 4 stories out of his window. About 10 hours after he jumped, my brother, Justin, passed away at the age of 41. It pains me that he had to go through such a horrible death. I will do all that I can to keep his memory alive.
At the age of 44 I have made the hard decision to not be tested. I have a 13 year old son and am happily married. At this point in my life I chose to live my life thinking…. maybe I have it, maybe I don’t.
I will do everything in my power to raise awareness for Huntington’s Disease. As I always say HD SUCKS!
Thanks for taking the time to read my personal story. I hope you are able to join us on June 1st, but if you can't please consider making a donation.
Thank you for visiting my personal fundraising page! With your help, we can help HDSA achieve their mission to improve the lives of everyone with Huntington’s disease and their loved ones.
The Huntington’s Disease Society of America is the premier not-for-profit organization dedicated to improving the lives of everyone affected by Huntington’s disease. From community services and education to advocacy and research, HDSA is the world’s leader in providing help for today, hope for tomorrow for people with Huntington’s disease and their family.
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.
HD is known as the quintessential family disease because every child of a parent with HD has a 50/50 chance of carrying the faulty gene. Today, there are 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease.
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.
Please register and help make a difference! If you cannot participate, please consider making a donation to my personal fundraising page by clicking the ‘Donate’ button at the top of this page.