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By Matthew Santamaria (msantamaria@hdsa.org)

Hanson, Massachusetts resident Kerry Skinner is not at-risk for Huntington’s disease (HD). However, she has witnessed the symptoms of HD firsthand in her family.

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.

Kerry is the granddaughter of Frank and Kathleen Boothby. Frank was in the Navy and served in World War II. In his late thirties, Frank started to show symptoms of HD and was later diagnosed with the gene that causes HD.

The symptoms of Huntington’s disease are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously. Symptoms include personality changes, mood swings, impaired judgement, involuntary movements, slurred speech, and significant weight loss.

When Kerry was two-years-old, Frank passed away due to complications from HD. However, the family’s HD battle was not over. Kerry’s mother is the oldest of Frank and Kathleen’s eleven children. Each child of a parent with HD has a 50/50 chance of inheriting the faulty gene that causes Huntington’s disease.

Eight of Kerry’s aunts and uncles tested positive for the gene that causes HD.

“They all went through the regular daily schedules we all go through until they lost control as their brain cells began to slowly die,” said Kerry. “I just can’t imagine what that would feel like but I do know not one single one of them or anyone else deserves to go through what they did and I pray everyday it all ends soon.”

Kerry’s mother tested negative.

The decision to get genetically tested is difficult to make. Each year, 5-10% are tested. It is never the right or wrong decision to be tested. There are people that see no benefit in knowing that they will develop the disease while others want to know in order to make informed choices about their future. It can take up to several weeks to receive your results from the genetic testing center.

“I clearly remember years of my mother making trip after trip to sibling after sibling to support and help them in anyway,” said Kerry. “From a visit just to say hi, to a grocery or coffee run or sometimes having to keep her distance because of the uncontrollable anger they had. But the anger would give way and they would see and remember the love my mother had for them and remember she was there any step they needed her because she truly just cared and had an amazing role model, their mother!”

As the family was battling this disease, they would stay together and HD did not change the family’s relationship.

“They always came back together because that’s what their father who passed from HD and mother had taught them,” Kerry explains. “Most people look up to and admire their mothers, but my Grandmother, mother and aunt Bridget are truly something special that this world needs more of because many people wouldn’t step up to do what they did.”

Kerry’s aunts and uncles have been a part of HD research. Her uncle Tommy and aunt Colleen were covered on the news for a research experiment that they were involved in.

“They both had pig cells implanted to replace their dying brain cells from HD,” said Kerry. “Unfortunately, it did not work nor did it slow down any progression. But I was so proud of them and even more so now being an adult and really understanding how much courage that would take! They helped us get closer to finding a cure for HD and that makes them heroes in my eyes!”

The family would have been able to do all the HD research without the help of Kathleen.

“They wouldn’t have been able to do all of this without my grandmother filling her calendar with daily trips in and out of Boston,” Kerry explains. “She devoted her time and love with more patience then I can imagine to finding a cure to end this disease that was taking her family. As she grew older, she never gave up hope and was so lucky to have my mother and aunt Bridget who helped fill her shoes and step in to care for their family.”

In 2001, at the first HDSA Celebration of Hope event in Boston, Kathleen was awarded with the Family of the Year award that was presented to the Boothby Family for their work in the HD Community.

“My grandmother was the most selfless, loving and strongest woman I have ever met,” said Kerry. “This woman deserved this and so much more! My grandfather had already passed, my aunt Johanna had also just passed away being the first of the siblings to lose her battle to HD but every other sibling was able to come together. Some traveling from Tewksbury Hospital, where they now were cared for, to watch her accept this award together! It just gave everyone a little more Hope that one day by sticking together we will conquer this disease!”

Kerry does not have to worry about inheriting HD, but witnessing the symptoms first-hand makes you not forget as she wants to make a different in the HD Community.

She goes to see most of her aunts and uncles in Tewksbury Hospital where they also have the HDSA Team Hope Walk each year. 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. Kerry has praised the care that they have received at the hospital.

“There isn’t a single day that goes by that my heart doesn’t ache for someone who has HD or someone who loves someone with HD,” said Kerry. “I’ve watched my aunts, uncles, grandmother, mother, and now cousins go through enough pain that it’s taught me so much! I am beyond lucky to not have to wake up every day worrying if I have the gene or not but now, I need to do something about it! Right now, I spend as much time as I can with my cousins who have been diagnosed or at risk and I do as many walks a year as I can to help raise money and awareness to put HD in our past!”

Kerry has twenty-three cousins. Fifteen are at-risk, a few tested negative, a few tested positive, and a few are unsure of testing for HD.

“I remember my mother always saying when her father’s symptoms were progressing that he always reminded her you need to help take care of your mother, respect her and just do the best you can do,” said Kerry. “My mom did just that! They taught me not just through words but from their actions that we stick together, help each other, love each other and never give up Hope! Family is everything and I’m going to do as much as I can to help their dark days shine a little brighter, I know that’s what I would want!”

Kerry has a message for the HD Community:

“My days can be tough watching what my family has and goes through on a daily basis but how I feel will never compare to the ones that have to deal with it personally! They are the true heroes who can no longer speak because their voices were taken from them with HD. I hope and pray every day with everything in me that one of these times that my children find a dandelion in a field and we blow it out and wish for a cure for HD that it’s that time for our wish to come true because I truly feel it’s coming!”

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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. Every 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 41,000 symptomatic Americans and 200,000 at-risk of inheriting the disease. In less than 10% of cases, juvenile Huntington’s disease (JHD) affects children & adolescents. JHD usually has a more rapid progression rate than adult onset HD; the earlier the onset, the faster JHD progresses. HD is described as having ALS, Parkinson’s and Alzheimer’s diseases – simultaneously. HD is characterized by a triad of symptoms, including progressive motor dysfunction, behavioral disturbance and cognitive decline.

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