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By Matthew Santamaria (msantamaria@hdsa.org)

You never want to see a loved one suffer. You want to be there for that loved one and do anything you can to help. Abigail DeClerk would do anything to see her adoptive sister Lisa healthy again.

This sister bond has been powerful since day one. Lisa was born in January of 1984 and was adopted sixteen days later by the DeClerk family. After her, Abigail’s brother Ben came along and then finally Abigail.

“Our family lived a very normal yet well awaited life in Little Rock,” Abigail explains. “We fought like siblings do and did everything we could to unintentionally keep our parents on edge. Lisa and Ben were constantly stuck with me as a shadow, soaking in everything they said and did and (USUALLY) tattle telling, because let’s be real, I was the best little sister ever.”

By age fourteen, Lisa was starting to act very clumsy. This included falling into things which resulted in bruises all over her legs. When she was seventeen years old, Abigail was terrified of her driving because Lisa would hit trash cans, mailboxes, and curbs repeatedly. There was also a change in behavior.

“Our super scholastically dedicated girl had turned into a rebel and it was quite the roller coaster with emotions and questionable decisions, which we thought just came along with her being a teenage girl,” said Abigail.

However, this was not the case.

Lisa was suffering symptoms from Juvenile Onset Huntington's Disease (JHD). This is a progressive form of Huntington’s disease (HD) that affects children and teenagers. It is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It usually deteriorates a person’s physical and mental abilities which has no cure.

Lisa’s clumsiness and actions were symptoms of the disease which includes personality changes, coordination, behavior, speech, or ability to learn. Physical changes include clumsiness, slowness of movement, and leg stiffness.

“Lisa knew although it was too late for her to be cured, there was still a huge chance something could be done to save her children if they are to have HD,” said Abigail.

During her late teens/early twenties, she had two children named Emma and Ean. Emma is known as “sunshine baby” and Ean is layback who loves fishing and dirt biking. She took on the mother role from day one and it is her personal most prized achievement. Once the family moved to Colorado Springs, it was considered a fresh start.

“It provided so much joy and essential building blocks in which our family has utilized to the fullest,” Abigail explains. “Lisa decided to continue her education at a local community college and put the kids in daycare. She had both kiddos reading at a 2nd grade level by kindergarten and taught them the concept of being on time, which no one else in our family quite understands to this day.”

Once she was officially diagnosed with the disease, Lisa made it a point to go to every HDSA Team Hope Walk that was around in Colorado for the next few years. The Team Hope Walks is HDSA’s signature grassroots fundraising campaign designed to provide hope and support for those touched by this devastating disease.

“She power walked so fast for the first two years at the HD event, there were people literally dodging her,” Abigail explains. “One year, our team won the most participation award and received a beautiful trophy which she and all of us take a lot of pride in to this day. It has never been an attention thing for her but an acceptance of the cards she has been dealt and hope for a better life tomorrow and for years to come for those effected by this nightmare of a disease.”

Through thick and thin, Lisa and Abigail had the sister bond that nobody can break and lived their best lives together.

“Every Thursday night we would go to lady’s night at the bowling alley for a good three years,” Abigail explains. “Occasionally she would leave me in the Burger King parking lot when I would go inside to use the restroom…I chased the car an entire three blocks once as she laughed and kept on driving.”

As the disease has progressed, Lisa has been in and out of hospice care. She is having a very tough time talking but she still tries to be independent.

“She is at a point now in which she drinks smoothies religiously from a straw that our mom provides,” Abigail explains. “Lisa sometimes thinks she sees things that scare her when she’s trying to sleep and cannot get around on her own, although due to her “I can do it myself” attitude, she still tries.”

Abigail does not live in Colorado anymore as she moved back to Arkansas. She noticed that Lisa is getting extremely tired but the family still wanted to know her family history of the disease. Lisa’s close friend, Amanda Thomas, found someone in her biological family and discovered that HD has been present in the family.

For Abigail, seeing your sister in this situation must be one of the hardest things to watch and that nobody should go through.

“It has been extremely hard over the years to watch as a little sister. Lisa has always been my biggest idol,” said Abigail. “We are determined to stay strong in hope and we will support Lisa and the kids for a lifetime.”

After soul-searching and prayer, the family has decided to agree with Lisa’s wishes and not have the feeding tube as her can do attitude has never gone away.

“Of course, you want to hold on to them forever and the cognitive aspect of their wishes becomes altered as their disease progresses, so it’s extremely tough to make those life altering decisions knowing they can’t communicate as they once could.”

Abigail has a message for the HD community:

“Our family has gone through a lot of anger, pain and terrible days but we’ve also learned the beauty of life and the importance of genuine love. It is ok to be upset, but I hope you don’t let this illness define who your loved one is while they battle this disease. They are still the same person you loved from the second you met them. The individual you love who has this disease is going to leave their own legacy that you can share with the world.”

“NOW GO SHARE THOSE LEGACIES and HAVE HOPE!”

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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.