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By Matthew Santamaria (msantamaria@hdsa.org)

Losing a loved one can be the hardest scenario in life especially at a young age. Alyssa Cancelmo is only 22 years old and she lost not only her father but her sister, Meg, as well. They both passed away one year apart.

Her father had Huntington’s disease (HD). 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. Meg was a different story.

At first, she was diagnosed with Attention Deficit Hyperactivity Disorder (ADHD). This is a condition that includes attention difficulty, hyper activity, and impulsiveness. According to Alyssa, she dealt with attention problems but never expected what would come next. Meg was misdiagnosed.

She would then be diagnosed with Juvenile Huntington’s disease (JHD), according to 10% of cases, HD affects children or adolescents. She was only 10 years old. Compared to adult onset HD, JHD progresses more rapidly. The symptoms of this disease include stiff or awkward walking, increased clumsiness or changes in speech.

“After she got diagnosed, my mom told me and I just started bawling crying, and she said we couldn't tell Meg she had JHD,” Alyssa explains. “When Meg and I were younger, we had planned to move to our favorite city, New York City. She was going to be an eyelash model (because she always had INSANELY long eyelashes) and I was going to be a lawyer. When I found out she had JHD that dream was crushed.”

Meg also loved animals and dreamed of becoming a veterinarian. She was so young and bright. She brought happiness into the room. Alyssa and Meg were not only sisters but best friends as well.

“She was the best sister anyone could ever ask for,” said Alyssa. “When she was in middle school, they had a prize box where you could pick something you wanted from if you behaved well enough. She behaved well enough, and instead of getting something for herself, she got me makeup and hair accessories.”

Then, due to the disease, Meg would stay at Baystate Medical Center in Massachusetts. She would continue to do good deeds for her family.

“When she was at Baystate, my Auntie Michele and Uncle Steven used to take Meg to the gift shop to get her candy,” said Alyssa. “They would also leave her change so that I or her Personal Care Assistant Jaime would take her to the gift shop to get the penny candy there. When Meg was in her coma, Jaime told my Mom and me that Meg had been saving up her money that Auntie Michele and Uncle Steven gave her to buy my mom a Christmas present because it was close to Christmas.”

Jaime was amazing to the family. She would go above and beyond for Meg. Since Meg was now in a wheelchair, she would take her on long walks which was Meg’s favorite. She loved going around all of the different parts of Baystate as Jaime wanted everyone to know Meg. At Baystate, there was a little hill and Jaimie would push her wheelchair down like she was rising a roller coaster. Meg loved this.

“Jaime was an angel sent from Heaven just when Meg needed it the most,” said Alyssa.

However, Meg would not beat the disease as she passed away at the age of only 15 years old. This would devastate Alyssa as she lost two family members three months apart. After Meg passed away in November of 2015, her father passed away February 3, 2016. “I took the fall semester off from undergrad when my sister and my Dad passed away from HD,” Alyssa explains. “I tried to go to classes after they passed but I couldn't focus they were all I could think about.”

Alyssa would eventually go back to Western New England University and graduate. She finished with a 3.6 GPA. Alyssa was a part of Alpha Lambda Delta Honor Society, Psi Chi Honor Society, and also graduated Magna Cum Laude. However, she still needed help dealing with the deaths.

After graduating with her undergrad, she decided to go to therapy and HD support groups. She found this very helpful as this let her fully express her emotions and to know that she is not alone in the HD community.

“They really helped me a lot, and I made friends at the support groups,” Alyssa explains. “It helped deal with my grief and feeling like I'm not alone.”

Currently, alongside her mother, she advocates and assist in events for HDSA’s Massachusetts Chapter as her mother Kinser is on the board. Alyssa is also going for her Masters in Library and Information Sciences at Simmons University. She also plans on getting tested for the disease as well.

No matter where life takes her and the people that she meets, her best friend will always and remain to be Meg.

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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 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 (HDSA) 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.