'This story, it’s a reminder that despite having a horrendous disease, despite having horrendous luck in life,' said Dr. Christopher James, Sara and Matt's neurologist at IU Health, 'love can come through.'
'Mom, I did something really stupid'
Sara was living in Columbus, Ohio, in her own apartment, working as an inside sales rep at Zaner-Bloser, an education publishing company. "We get back to her apartment and she started having a fit," said Catino. Sara was adamant:"I don't agree with the social workers. They are wrong." Suicide is common in Huntington's patients, said James. Nearly 30% of people diagnosed with Huntington's attempt to take their life at least once, according to the National Library of Medicine.
Sara was excited and nervous."All of the above," she said. The day she had been waiting for had finally come. "So excited. Very happy." They weren't about to miss this wedding. They weren't going to miss seeing Matt on the happiest day of his life. Duncan said she sees that every single day with Matt and Sara."Their love is an inspiration to not only the staff but the residents and everybody that meets them."
Matt's family noticed changes a few years prior to his diagnosis. Despite being a highly accomplished sound engineer in the music industry, Matt quit the business. He went to work at Starbucks. Now Matt is self-conscious about his words not coming out, Weeks said. He hates how long it takes to put his thoughts together and how sometimes, even then, the words don't come.
Sprinkled in the mulch outside the entrance to Summerfield are tiny painted rocks with the names of residents who have died. On May 12, another rock needed to be painted. A resident had died that morning, the second rock that week. Still, that week at Summerfield, residents crafted tie-dye T-shirts to wear for an upcoming picnic at the park, they splashed on a Slip 'N Slide and they got temporary butterfly tattoos, the symbol of Huntington's.
Matt grew up loving music. His father, Carl Weeks, at one time had considered becoming a concert pianist. His mother, Barbara, was a wonderful guitar player. When she graduated from Carmel High, Sara earned her degrees at Ball State and Ashland University in Ohio. Education was her passion. It was a perfect career for Sara; she had such a giving heart.
But Smouther was acting differently. Their marriage was on the rocks. The couple went to different doctors. At a ceremony, Sara went up to receive an award and fell in front of everyone. It was crushing and embarrassing. Sara knew it was time. She wanted to get tested. Catino, Sara's two sisters, her husband and her in-laws were with Sara when she got the results in Ohio. The words came out in slow motion. Sara had Huntington's. The room was somber."It was devastating," Catino said."At the same time, Sara would say it was a relief. 'OK I know. I know I do have it. Now, I've really got to figure out my future.'"
Summerfield has rules in place for residents who want to have relationships, and it goes by steps. The first step is hand holding and kissing. Huntington's has a way of isolating people as they go through cognitive decline and their world starts to slip away. Duncan showed Matt all his ring options. It took an hour and a half, but Matt finally found the perfect one.
He was holding the ring box."I love you," he said. Sara was so caught off guard, she was shaking."I love you. Yes. Thank you, thank you," she said. Matt was shaking, too. Watch Matt propose to Sara: 'We all cried'Dana Hunsinger Benbow, Indianapolis StarMatt is at the altar. Sara is sitting in the back of the room, watching. With help, Matt stands up. With help, Sara stands up. She is radiant, beautiful and smiling.
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