Editor’s Note: Huntington Disease Society of America’s Missouri Chapter is having a Team Hope Walk event on Saturday April 27, 2019 from 9AM-2PM at Tilles Park in Ladue, Missouri.The Team Hope Walks are HDSA’s signature grassroots fundraising campaign designed to provide hope and support for those touched by this devastating disease. Contact: Brittany Roberts Phone: 314-640-7777 or email: firstname.lastname@example.org
By Matthew Santamaria
When you are young, there is not a care in the world. You do not have the responsibilities yet and your living life to the fullest. For Mandi, she had a lot on her plate.
As a toddler, she knew what Huntington’s disease (HD) was as her grandmother had it. 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 during their prime working years and has no cure.
“The only part that I can remember is her chorea was very advanced and her movements were so jerky it was almost impossible for her to hold me,” Mandi explains. “However, my mom was brave enough and she did not even think twice about letting her hold me because the joy on her face was something so out of this world to see.”
The symptoms of Huntington’s disease are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously. Other symptoms include personality changes, forgetfulness, slurred speech, difficulty in swallowing, and significant weight loss. To learn more about the symptoms, click here.
Years later, the disease would come back in her life. Mandi’s father was diagnosed with HD which was earth shattering for her. Each child of a parent with HD has a 50/50 chance of inheriting the faulty gene that causes Huntington’s disease. According to Mandi, his symptoms came about quickly and changed her entire existence.
“Seeing him change and morphed into a person who was nothing like the kind, loving, encouraging, silly dad I had loved with my life was something that I would never in your worst dreams imagine,” Mandi explains.
Her parents split up sometime before the diagnosis but the news greatly affected her mother. She would resort to drug use as her father’s health was steadily declining. She became absent from the family picture.
“She left everything on my shoulder and my sister’s as well,” Mandi explains. “My family just completely spilt and fell apart during this time. We had a little help here and there, but not much. Raising my sister and taking care of a declining father were my new reality at the ages of about 10 years old. I was a child still having to wear the weight of so many things no child should ever have to face.”
Through the dark days, her father’s sense of humor made her smile. He would never ask for help and never wanted people to spend money on him or be sad for him. Her father always knew how to make someone laugh and has kept that humor through all the changes in his life.
However, after spending a lot of years in the caretaker role, it started to become emotionally draining for Mandi. At 17 years old, Mandi moved out of the house as she felt it was the best decision for her as she needed to clear her mind from the situation.
“I couldn’t keep my head above water any longer, I was going to drown,” said Mandi. “Leaving ended up being the best decision I’ve ever made because I had to save myself before I could save anyone else.”
Mandi would eventually return to the caretaker role as she had a new outlook on life. She came back with a clear mind set and was ready to be the advocate that her father needed.
“When you face this type of horror, you can still find a light,” said Mandi. “Knowing this was a possibility to develop the disease ignited a person bursting with a drive to live her life right now. You realize that tomorrow is not promised to us and let that motivate you to live with a sense of no regrets.”
Mandi has found happiness in life as her family has increased. Mandi is thankful for the great friendships that she has. She considers her friends as family. After several bad relationships, she met her husband who has treated her nothing but perfect. He changed every idea that she ever had about how she should be loved and treated. He was the love that she needed and her in-laws are the family that she needed as well.
“My in-laws have always loved me and opened their hearts to me since day one,” Mandi explains. “They are my best friends and I never knew I could love in-laws in the way that I do.”
Mandi feels that her HD story doesn’t define her and never will. She has been told it has been misfortune what she went through but she does not believe that. Everything happen for a reason in life. Every obstacle you go through ends up making you stronger at the end of the day. For Mandi, she gets stronger and not weaker.
“I believe I was given these hurdles to form the person I would become,” said Mandi. “It has taken me a long time to embrace my situation but I wholeheartedly believe I would have never been given these gifts of endless empathy and kindness without this happening.”
Mandi finds writing a therapeutic tool as it allows you to fully express your emotions. When it was getting tough, Mandi would just write about it. For the HD Community, she highly recommends this and it will allow you to open up in more ways than one. Her secret goal was to start a blog as she wanted others to know what it is like being a caretaker.
To read her blog, click here.
“I just wanted a way to share my experiences with others who were struggling,” Mandi explains. “I felt like all the things I had been through should be used as a tool to help others. I wanted to give a positive spin on something very dark. All that I could find in my search for things on HD was so sad and I wanted to create something sunny and inspiring.”
Mandi would start getting involved advocating and has done incredible work for HDSA’s Missouri Chapter. In her first year at the St. Louis Hope Walk, she raised over $3,000. Since then, her teams have raised over $10,000. On April 27th, at the St. Louis Team Hope Walk, Mandi and her family will be honored.
“Mandi is an inspiration to everyone she is around,” said Brittany Roberts, HDSA’s Missouri Chapter Walk Coordinator. “She has the biggest heart and wants to bring joy to anyone affected by HD. She is dedicated to raising money, awareness and positivity to the HD community.”
Mandi has a message for the HD Community: “Being the mega advocate that I am, I wholeheartedly agree that the time is now to enroll in clinical trials and studies we must assist in getting them done in a timely matter. We must all be on the same page to make these medical advances happen and move this forward. We cannot let these advances go unused. This dedication to following through will SAVE MANY LIVES.”
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. 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.