Chad's Story
Raised in Southern California, Chad Pearse spent his formative years surfing at the beach and cross-country running in the sunshine. Growing up in the easygoing, carefree California lifestyle was most enjoyable for him. He and his mother, Nancy Sweet, regularly attended church and weekly sporting events, and after college, he married and started a family of his own.
In his mid-30s, Chad’s focus shifted when he was diagnosed with Huntington’s Disease (HD), a genetic disorder characterized by symptoms of uncontrolled body movements, decline in cognitive function, judgment and memory, and alterations in mood. As someone who possessed a fun-loving attitude and had a knack for athleticism, this disorder would be life-altering. As the disease progressed, it took a toll on his emotional, familial, and professional life. His mother reflects that she was devastated by his diagnosis and the life changes that were unfolding secondary to the progression of HD.
“The pain of knowing your only child is going to die from a disease that will slowly take over his mind and body is indescribable,” Nancy said.
Nancy recognized that her son would need 24-hour care as the disease progressed. In 2016, she began researching facilities and found Sitrin’s promising NeuroCare program, which was set to open later that year. Making a trip to tour the facility, she was amazed that such a wonderful, professional, and compassionate place existed for individuals with HD. However, it was nearly 3,000 miles from where they lived, and at that time, obtaining New York State Medicaid was a significant challenge, as they did not live within the state.
Continuing her research, she struggled to find help for her son in their home state, an obstacle most HD families face. When it became evident that they would not find placement in California, Chad was accepted to a facility on the East Coast. Thankful to have found a place, he settled in. However, it wasn’t long before they realized the facility was not the best fit for his needs.
During that time, Sitrin made the decision to offer Chad a place to live on its NeuroCare unit. In the meantime, Nancy continued the pursuit of obtaining New York State Medicaid. She was successful, thanks to the assistance of experts and county and state officials.
For nearly four years until his passing in August of 2021, Chad had settled into living at Sitrin and had become more calm and content. Finally at a place where he felt at home, he enjoyed recreational therapy activities, games, events, binge-watching Netflix, and had built friendships with other residents and staff on the NeuroCare unit. He had been given back his freedom and encouraged to be as independent as possible, and was also provided with compassionate care and a sense of security he and his family had sought for many years.
Though his HD continued to advance, his emotional wellbeing had come full circle. With visits throughout the year and daily video chats, Chad stayed connected to his children and mother. Nancy now had the opportunity to go back to being his mom, and allowed the caregiving to be done by Chad’s new family at Sitrin.
Although Chad’s passing left an irreplaceable void in his family at home and his family at Sitrin, Nancy wanted to share his inspiring story to offer hope to other individuals and families affected by HD.
