Imagine being a child and being told your mom's kind of odd behavior is part of a progressive disease that eventually will take her life.
You learn her slurred speech and impulsive behavior will give way to her inability to speak or to control voluntary body movements. Eventually, though her mind will be alert, she'll be unable to handle routine daily activities. And in the years when you'll most need her guidance yet long for independence, she will need you to take care of her.
If you goWhat: Team Hope's HD Walk for a Cure
Why: Proceeds support the Huntington's Disease Society of America
When: Registration begins at 9 a.m. Sunday, May 19; walk begins at 10 a.m.
Where: From the Riverwalk Grand Pavillion, west of Centennial Beach, 500 W. Jackson Ave., Naperville
To donate: Checks made out to Illinois Chapter-HDSA (with "For HD Walk" in the memo line) may be sent to Illinois Chapter-HDSA, P.O. Box 1883, Arlington Heights, 60006-1883
Imagine knowing all this and being hit with the fact that your mom's Huntington's disease is hereditary, that the particular gene that launched her symptoms may be part of your makeup as well.
That the odds are even her fate will be yours.
Emily Hodgson grew up in that reality. She was just 8 when her mother was diagnosed, officially making her one of the roughly 30,000 Americans with Huntington's and, by extension, including her children among the 250,000 at risk for developing the disease, according to statistics from the Huntington's Disease Society of America.
Each child of someone with Huntington's has a 50 percent chance of developing the disease, according to information from the HDSA.
Huntington's is a progressive brain disorder caused by a variation in a single gene, identified by researchers in 1993. Since then, scientists have worked to develop treatments and continue to search for a cure.
Hodgson and her family are part of that effort to cure Huntington's. As Team Hope, they organize the annual HD Walk for a Cure to raise money that supports research through the HDSA. In eight years, the walks have generated $375,000 for the cause. This year the walk moves to Naperville, stepping off at 10 a.m. Sunday, May 19, from the Riverwalk Grand Pavilion.
In advance of the walk, Emily Hodgson tells us what it was like growing up as a caregiver to her mother.
I was 8 when my mom, Paula Hodgson, was diagnosed with Huntington's disease. HD affects each person in their own special way. Some of the most common symptoms make patients seem as though they are drunk; the symptoms typically include slurred speech, balance problems, trouble swallowing, and degeneration of the parts of the brain that control impulses, behavior and rational thought. I knew eventually she would die from complications of Huntington's.
There is a genetic test for HD and scientists have discovered that the more repeats of the rogue Huntington gene present, the earlier the onset of the disease and the more severe the symptoms will be.
It is a dominant gene, so each child of a person who has Huntington's has a 50/50 chance of inheriting it. I have found a lot people don't know much about Huntington's disease and how it financially, emotionally and physically affects families and care giving. I have been affected by Huntington's because I am at-risk to have the genetic disease.
By the time I was in middle school, every day when I would get home, I had to make sure my mom was OK. Being a caregiver for a parent is tough. She needed assistance with a lot -- from eating, getting up and getting to the bathroom to helping get her up and walk around the house. Every day until she passed, 15 years after her original diagnosis, my family and I would make sure my mom was taken care of.
The surprising part of the experience of taking care of my mom on a daily basis was her upbeat attitude. She had a smile and would laugh. We called her our HD Warrior. She was outspoken and always working to make sure others understood that she was OK with having HD.
She had this deep desire to teach others about HD. She wore these huge "HD Sucks" buttons or bumper stickers on the back of her wheelchair and T-shirts she picked up at conventions. She even served the Illinois Chapter of the Huntington's disease Society of America in many different roles.
Knowing how much my mom suffered from the symptoms toward the end of her fight, I realize how important it is to find a cure and educate people on this topic.
After my mom passed away, our family and friends started the annual Team Hope Walk in Illinois. The first one had a huge turnout for a first-time event like this. We had more walk-ins that year than those who signed up in advance. I love doing the walk year after year. It just keeps getting better and bigger and it is very nice to see all the smiling faces of people who keep coming back.
The support we get from Huntington's disease Society of America is wonderful with our fundraising efforts. I would tell someone that their $20 walk fee and anything else they give will go toward research. I hope one day I wake up and we will have found a cure for this disease.