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By Matthew Santamaria (msantamaria@hdsa.org)

Emily Hodgson’s mother was a hardworking and caring mother. She was a soccer mom, amazing baker, gardener, always on a diet, and worked as a psychiatric nurse.

She was “Super Mom”. When Emily was in grade school, her mother went to night school, was a Sunday school teacher, and attended every sporting event for the family. She sang, read often, and rarely said a harsh word.

In 1987, the family moved from Bolingbrook to Naperville, Illinois. One night that Emily remembers clearly, she was laying on her mother’s leg watching television and her leg started to twitch. Six-year-old Emily asked her why that happen and her mother would laugh it off then change the subject.

“Super Mom” would face the toughest battle in her life: Huntington’s disease. HD 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.

“Starting in sixth grade, I would be the one who would get off the bus and go right home to check on her and release the aide who would be there to help her,” Emily explains. “I was her main caregiver, so I took a lot of verbal abuse and it hurt.”

Her mother told Emily that she wished that she was never born. This was not the mother that Emily knew growing up as this was the symptoms of HD taking over. The symptoms of Huntington’s disease are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously.

Symptoms include personality changes, mood swings, depression, impaired judgement, involuntary movements, slurred speech, difficulty in swallowing, and significant weight loss. Today, there are approximately 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease.

“I would yell back at her and I would walk upstairs to my room and she would still be yelling,” Emily explains. “My dad (Dave) was the buffer between us. He was usually the one who would talk to my Mom about how, much I am hurt by the words that she would say to me. She tried to apologize often, when she had meltdowns, but it still resonated for our whole family. It was tough and toxic and unpredictable, too. One day she’d be hugs, loving, and maternal.”

When Emily was in high school, her mother’s health started to worsen. She was in the ICU for two weeks because of a fall. The doctor found bleeding under her skull and they had to put a shunt in the left side of her brain to help drain it.

“After she was back home, I was still a senior in high school I was able to graduate on time with her watching me walk across the stage during the ceremony,” said Emily. “So, after I graduated is when she had to be put on hospice because of her head injury.”

Her mother was still able to talk as she decided that she wanted a DNR (Do not resuscitate). At the age of eighteen years old, Emily had to sign off on those documents.

Emily did receive help with taking care of her mother. Dave remarried to Susie. At first, Emily was hesitant to get close to Susie because she did not take the time to really get to know her.

“I was very grateful after a while because she is such an amazing cook and she got my Mom’s weight up along with taking a good amount of pressure off, of my shoulders,” Emily explains.

Then, on June 5th, 2004, her mother passed away due to complications from HD.

“I was upstairs in the house getting ready for a wedding that I was going to attend that afternoon,” Emily explains. “I remember Susie running down the stairs saying she is, gone she is gone. I ran down the stairs and into the family room looked at her and she had passed away peacefully in her sleep.”

In November of 2018, Emily tested positive for the gene that causes HD. Each child of a parent with HD has a 50/50 chance of inheriting the faulty gene that causes Huntington’s disease. Emily has two boys that are at risk for HD.

“When I was going thru a very rough patch, I would drink myself to the point of not wanting to be around anyone,” Emily explains. “Lost interest in the things I used to enjoy. After I went to see my primary care physician, she said that I should get on an anti-depressant to help me with my depression.”

Through it all, she got better thanks to her family.

“They are the ones who were the main reason why needed to get help for myself to get right so I could do it to prove to people that you can hit rock bottom and come back up if it something you want to do,” said Emily.

She lives with Dave, Susie, Bob (Susie’s son), and Emily’s older brother. Bob is currently battling HD as well.

“We just recently moved into a bigger house because my dad and Susie knew that they would need to help Bob and me with both of us having HD,” said Emily. “I have told Bob every day that I love him so much and now I have been a part of his caregiving team to help with my Dad and Susie so they can get out and do stuff that they need to get stuff done.”

Since her mother’s passing, the family has helped spread HD Awareness through HDSA’s Illinois Chapter. In 2005, the family started the Grand Pavilion Walk in Illinois and the event has gained traction in the area. It is now known as the Grand Pavilion Team Hope Walk.

The Team Hope Walk Program is HDSA’s signature grassroots fundraising campaign designed to provide hope and support for those touched by this devastating disease. Since its inception in 2007, Team Hope Walks have occurred in more than a hundred different cities.

Last year, the Walk raised more than $110,000. Since starting the Walk, the family has helped raise more than $1 million. This is now known as the biggest Team Hope Walk event in the country.

“We could not have done if it were not for our amazing committee members.”

Emily has a message for the HD Community:

“I get asked from time to time why does someone in my shoes have so much stuff on my plate along with being positive with this disease I always say well it was the way I was raised to know that no matter what happens in my life that I will always have my family come first. I have also been told that God is the one who is in control of this situation so maybe I’m the one along with my dad and Susie who are here to spread as much awareness as we can!!”

HDSA Films recently caught up with the family to discuss their lifelong battle with HD.

To watch, please click here

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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