Marriage in the face of 'horrendous luck.' Fighting same fatal disease they say 'I do'

Matt Weeks died Aug. 3, 2022, two months after marrying Sara Smouther. Both were battling Huntington's disease.

"Matt passed peacefully, with Sara by his side.  She now wears his wedding ring on a necklace, surrounded by their wedding pictures," said Matt's brother, Mark Weeks.

Matt had just turned 50 years old. Sara was holding his hand when he died. "Their love for each other was as pure as snow," said Sara's mom, Terri Catino. "They brought so much love and comforter to each other."

CLOVERDALE — Matt Weeks has a gold record, earned from a career as a sound engineer in the music business, a career that had him rubbing elbows with Billy Ray Cyrus, Martina McBride and The Judds.

Sara Smouther has two master's degrees, in education and literacy. She was a brilliant, shining light with dreams of making her mark on children.

Sara is 38. Matt is 49. Their acclaimed careers are over — abruptly ended as their brain cells die, their ability to walk has faded and as a devastating, terminal disease wreaks havoc on their psyches.

Their lives now are at Summerfield Health Care Center, where they sit in wheelchairs next to the bed they share holding hands, Sara rubbing Matt's chest, Matt trying to raise his head to smile at her.

Matt talks, but mostly only Sara and the workers at Summerfield can understand what he is saying. Sara talks, but her speech is slurred.

Some nights in the darkness of their tiny room at Summerfield, Matt sings to Sara. He sings their song, Ed Sheeran's "Thinking out Loud."

"When your legs don't work like they used to before … And I can't sweep you off of your feet … Will your mouth still remember the taste of my love … Will your eyes still smile from your cheeks."

Sara's legs don't work like they used to. Matt can't sweep her off of her feet. But they kiss, a lot, and Sara's eyes still smile from her cheeks.

The smile never leaves Sara's face. She beams as she talks about her upcoming wedding to Matt.

All Sara ever wanted was to live life, like most people do, not wondering when death would come.

Her dad had Huntington's disease and died at 48. Sara learned she had it when she was 30. Matt's mom had Huntington's disease. He learned he had it at 34.

Years have passed since their diagnoses and both know time isn't on their side. Most Huntington's patients die within 10 to 15 years. Nobody wants to do the math.

Yet, in the face of a battle with a fatal prognosis, Sara and Matt were married Saturday.

"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."

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'Mom, I did something really stupid'

Before she put on her white dress and veil, before she came down the aisle at American Legion Post 281 in Cloverdale with friends, family, caretakers and joy all around, Sara tried to take her life three times.

Sara knew what was coming with Huntington's. She knew the deterioration. She knew what the end was like.

She had watched her dad, Stephen Smouther, die from the disease. Her grandmother died from Huntington's and her great-grandmother drowned herself in a family pond.

Sara was living in Columbus, Ohio, in her own apartment, working as an inside sales rep at Zaner-Bloser, an education publishing company.

But she couldn't live on her own. She was unsteady and had fallen several times. She was having behavioral issues. She had recently been diagnosed with Huntington's.

Lindsay Williams, Sara's sister who lived in Columbus, set up Visiting Angels to care for Sara. Terri Catino, Sara's mom, told her daughter that if she wanted to live alone, she needed help.

Sara disagreed. Williams and Catino took her to a social worker, who told Sara she needed care. Sara was devastated.

"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."

When she thought Sara had calmed down, Catino got into her car to head back to Indiana. Halfway home, she called to check on Sara.

"Mom, I did something really stupid," Sara told her mom. She had taken a bottle of pills to try to end her life.

The call was made to 911 and Catino turned her car around. She and Williams met Sara at Ohio State, where she had been admitted to the psychiatric ward.

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.

"It's a combination of one, you've been given this horrible diagnosis and, beyond that, there are brain changes that start to occur that make depression more common," said James. "Patients start to become a lot more impulsive."

When they want everything to end, they don't think it through. They try to end everything, the frustration, the pain, the deterioration, the fear.

Sara knows now her life is worth something. She is something, even if it's a former version of a vibrant woman with the world at her feet. Sara found the love of her life, as her and Matt's lives inch toward the end.

And that made Saturday's wedding bittersweet, but it was more sweet than bitter.

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'They can spend eternity together'

Inside the American Legion on Saturday before the ceremony, Sara sat behind closed doors getting ready with her mom and her sisters. Beneath her long dress, she wore glittery white shoes.

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."

Marriage was something Sara had hoped and prayed would happen again for her. She had been married once before, months before she found out she had Huntington's. That marriage ended in divorce, in part, because he wanted children.

"I think secretly she didn't want to have a child," Catino said, "knowing she was going to die and not be there for that child."

As Sara got ready, Matt sat at the back of the wedding room in a black suit and purple shirt. His best man, Matt O'Mansky, was by his side. His friend from childhood, Mike O'Neal, was there, too. He drove hundreds of miles from Delaware to be with Matt.

They weren't about to miss this wedding. They weren't going to miss seeing Matt on the happiest day of his life.

Matt had always thought he would never get married, said Tasheena Duncan, the administrator at Summerfield. When Matt first moved to her facility, he told Duncan he had been afraid to get married, because he didn't want to have kids and pass Huntington's on to them.

Matt had a long-term relationship that failed years ago, in part, because his girlfriend wanted children.

"And then he met Sara and she felt the same way," Duncan said. "And Matt knew it was going to be OK."

Inside the small room Saturday decorated in purple and silver, with photos of Sara and Matt and a wedding cake with a bride and groom in wheelchairs atop, 40 people watched as Matt was wheeled to the altar.

"This day is a celebration of love," Duncan told the room. "And when Matt and Sara and I talked, we defined love as being able to overcome the past, the present and being able to love each other without condition."

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."

She then reveals a secret, a secret Matt told her in October, a secret he gave her permission to share on his wedding day.

"I'm going to do this without crying," Duncan says, tearing up. "It was so important for Matt to marry Sara because he knows when they get to heaven, they won't have Huntington's anymore. And they can spend eternity together."

'People begin to act differently'

Huntington's is a horrific disease. It's like putting ALS, schizophrenia, dementia and Parkinson's all together.

With Huntington's, nerve cells in the brain break down over time and die. And that affects every part of the body. The ability to walk and talk fades. Dementia sets in and eventually, if a person lives long enough, they are in a vegetative state before dying.

But at first, the disease presents itself in other ways, said James.

"People begin to act differently," he said. "They can have some new psychiatric problems, their personalities may change, they may get agitated, there are abnormal twitching movements in the body."

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.

"We knew something was out of whack," said Mark Weeks, Matt's brother, who officiated the wedding. "He went to live with our father. He was having trouble just paying the bills and keeping his life organized."

That wasn't the Matt his family knew. He had always had his life together. Matt had moved to Nashville out of high school with a dream to make it big in music. He had accomplished that dream, a gold record working on Michael W. Smith's album.

"He had always been funny, quick witted," said Weeks. "But also I would say a thinker in the sense that he could surprise you sometimes with his thoughts on life, politics, philosophical issues."

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.

On Saturday there was no hesitation. When Weeks asked Matt if he took Sara for better or for worse, two words flowed out easily: "I do."

No cure exists for Huntington's. The disease is genetic. Patients who carry the gene have a 50-50 chance of passing it on to their children.

About 30,000 people in the United States have Huntington's and another 170,000 are living with the disease, undiagnosed. Huntington's is considered rare, but 30,000 is a lot of people, said Duncan.

And that's why she decided to create a "heaven" for people fighting the disease.

'Living instead of waiting until the end'

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.

Summerfield, located in Cloverdale, 40 miles west of Indianapolis, began taking Huntington's patients in 2011.

Soon, a majority of its residents had Huntington's. In 2017, Duncan and LPN Heather Byrd made a decision. They would take only Huntington's residents.

These people fighting this terrible disease were their passion.

"I just fell in love," said Byrd. "They are people. They are people whose brain cells are dying, affecting every part of their bodies. They are spunky and sweet. They deserve the world."

Today, Summerfield is the only all-Huntington's facility in the United States with a capacity of 43.

"There just aren't places for them. I feel like they're almost forgotten," Duncan said. "They get the diagnosis and they're shoved to the side. But when they come here, it's the exact opposite. What can we do?"

Duncan and her staff of 42 go above and beyond to make the lives of their residents special.

The week IndyStar visited Sara and Matt before their wedding, the residents had waged a superhero battle with Nerf guns, swung at a huge Batman piñata and had water gun wars with the staff.

They planted flowers in the courtyard on Earth Day and they painted rocks with the things they wished they could change -- but can't -- about having Huntington's.

Swallowing, worried about their kids, walking, memory, dying, their rocks read.

Of Duncan's 40 residents, 10 are mostly independent, 20 need hands-on care and the other 10 need total assistance. At meals, 18 residents need to be fed by a staff member.

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.

"This disease goes so quickly and some of them will be up walking and pass away the next day," Duncan said. "So we try to make special moments. It's very important to me that they are living instead of waiting until the end."

Duncan starts to cry. She cares so much about these patients.

So when Matt and Sara came to her and said they wanted to get married, she knew what she had to do. Duncan had to plan a wedding.

'Sara always had a beautiful smile'

Sara met Matt at Summerfield, and the two fell in love. They were each impressed by the other's career.

It's common for Huntington's patients to be highly successful because they know time is short, Duncan said.

"They know that there's a 50-50 chance that they are going to develop it," she said, "so they push themselves really hard."

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.

In high school, Matt played in bands with his friends, mostly keyboard, but eventually picked up the bass guitar.

Matt headed to Nashville after high school to follow his dream. But rather than focus on the performance side of music, he became a sound engineer. He earned a gold record. He was on "The Tonight Show with Jay Leno."

Meanwhile, Sara was accomplishing her own dreams. She grew up playing soccer and basketball. She loved going to music concerts, hiking and camping. She loved to ride her bike. And she loved people, especially kids.

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.

"Sara always had a beautiful smile, always willing to help anybody with anything," said Catino. "She has always been a very upbeat, positive person and she still is to this day, even after being diagnosed with Huntington's."

But Sara's diagnosis and the months that followed, "that was the worst time of her life," Catino said. "For all of us."

'I was pretty scared ... I was hoping'

Growing up, Sara and her two sisters were always looking for symptoms. Catino had been open with her girls about the disease their father, Stephen Smouther, had. Their grandmother and great grandmother had died from Huntington's, too.

Catino and Smouther divorced in 1993, about a year before he was diagnosed. There was no blood test at that time to determine if a person carried the Huntington's gene.

But Smouther was acting differently. Their marriage was on the rocks. The couple went to different doctors.

"Huntington's was a concern of mine," said Catino. "The doctors put Steve through a bunch of physical exams and then told him they didn't think he had Huntington's."

After the divorce, Smouther learned he did have Huntington's. Sara was 10 years old. She started watching for anything, any clue she might have it, too.

Sara was in her 20s working at Zaner-Bloser in Ohio when she started noticing symptoms. She was twitching, she was dealing with depression, anxiety and obsessive compulsive behavior, especially when it came to spending money. She had fallen several times.

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.

Shortly after that, Sara married her first husband in April 2014. That November, Sara went to get tested.

Sara talked to social workers, doctors and psychologists. Anyone tested for Huntington's has to go through "a process," said Catino.

"Just to get an idea, are you really ready to find out?" she said. "Because once you find out, you can't unfind out."

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.

"I was pretty scared," Sara said. "Because I was hoping..."

"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.'"

After the diagnosis, while Sara was married to her first husband, her symptoms worsened. Caregivers came to the home to help her with showers and other daily activities.

Sara and her first husband separated in 2016 and then divorced, but they have remained friends.

After the divorce, Sara got a tattoo on her left wrist that reads "embracing my dance." It has blue and purple hearts, the two colors for Huntington's and juvenile Huntington's disease.

"It is her reminder to stay positive, to live each day to the fullest," Catino said. "They just want to feel normal. They just want to be normal." 

'It was my fondest wish come true'

When Catino learned Sara and Matt were dating, she asked her daughter who had been the aggressor. "She said, 'Me,'" Catino said.

"I introduced myself actually," Sara said smiling, nine days before her wedding as she sat in her and Matt's room at Summerfield. "I thought he was really cool and he made me happy." He also smelled really good, wearing his Dolce & Gabbana cologne.

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.

"That is all that is allowed because they have no impulse control," Duncan said. "We do it to ensure that we're not having people do things without consent."

Step by step, relationships are allowed to progress. Matt and Sara's relationship progressed. They came to Duncan last year and told her they wanted to get married.

"It was my fondest wish come true," said Mark Weeks, Matt's brother. "It was what I had really, really hoped for."

Huntington's has a way of isolating people as they go through cognitive decline and their world starts to slip away.

"Matt had withdrawn from much of life and had become rather secluded. He had lost touch with most of his friends. I think he had given up hope," Mark Weeks said.  "To marry Sara is the best thing for him. She’s wonderful, outgoing, feisty. She is just charming."

With their families' blessings, the wedding was a go. But there were no definitive plans. Not until Matt came to Duncan and said, "We have to do operation Get To The Chapel."

Matt didn't want to waste any time. He didn't know how much time he had left. He needed to find the perfect ring.

'They bring each other such comfort'

Inside Walmart, Duncan Facetimed with Matt, who was back at Summerfield. COVID was still at its height and residents couldn't leave the facility.

Duncan showed Matt all his ring options. It took an hour and a half, but Matt finally found the perfect one.

He decided to ask Sara to marry him at Summerfield's prom last fall. Duncan helped Matt call Catino, so he could ask for her daughter's hand in marriage. Of course, Catino said.

"When they're together, they are always holding hands or, when they're out watching TV, Sara lays her head on his shoulder," Catino said. "They bring each other such comfort. It makes me so happy."

While the other residents were getting ready before prom, Summerfield's staff came to the dining room with just Matt and Sara. They helped Matt get down on one knee.

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.

"I was beyond happy," Sara said. "It made me cry."

"He cried," Duncan said. "We all cried."

'She is beautiful'

Matt 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. She walks down the aisle, slowly as the wedding march plays.

Matt's head is down until someone whispers to him, "Look up, Matt."

There she is. His Sara.

"She is beautiful," Matt said days before the wedding when asked why he wanted to marry Sara. He tried to say more. There is so much more, but the words wouldn't come out.

"Everything, everything," Sara said that day of why she wanted to marry Matt. "He makes me so happy."

As Sara and Matt sat at the altar, Sara's friend, Jane Reiman came up to speak. "The answer to Sara's prayers, to be married, is coming true today," she said. "It's a miracle."

Sara takes Matt's hand. Her nephew comes forward to read a poem, "This Is My Wish For You," by Ralph Waldo Emerson

“This is my wish for you... Faith so that you can believe, confidence for when you doubt, courage to know yourself, patience to accept the truth, love to complete your life.”

Love to complete your life.

"This is truly a miraculous day, a truly wonderful moment for all of us," Mark Weeks said as he began the ceremony. "To see the triumph of love here played out before us."

He reads 1 Corinthians 13:13: "Three things will last forever, faith, hope and love. But the greatest of these is love."

That verse, Weeks said, "applies here today more than any of us has seen before. Matt and Sara, today you are showing us what it means to love, that love can be found where you least expect it, when you're no longer looking for it and without pretense, by showing your most authentic selves."

Weeks then asks Matt and Sara if they would take the other to have and to hold from this day forward for better, for worse, for richer, for poorer, in sickness and in health, both today and always.

"I do," Matt says.

"I do," Sara says.

"I now pronounce you husband and wife. Matt, you may kiss your bride."

Weeks helps Matt lean forward to Sara. Sara leans forward and wraps her arm around Matt's neck. They kiss. The room cheers.

"Ladies and gentlemen, it is with great pride, a sense of honor and privilege," Weeks says, "that I introduce to you Matthew and Sara, husband and wife."

'A happy story for such a sad disease'

Their wedding dinner was shrimp alfredo for Sara and chicken, bacon, ranch casserole with bowtie pasta (a bow for the groom) for Matt. There were appetizers, breadsticks, salad and an open bar.

There was dancing. And there was unbridled joy "in the midst of the worst disease," said Catino.

Days before the wedding, Summerfield's director of nursing Maggie Hayne, choked back tears as she talked about her residents, about Sara and Matt. She cried at Saturday's wedding.

"They're here and unfortunately they are in a body they can't control," she said. "And they know the destination."

Yet, they are happy and smiling. They just want to live.

"Sara just wants people to know she is living her best life, her and Matt, and you can do that," said Catino. "It's such a happy story for such a sad disease."

Learn about Huntington's and help

May is Huntington’s Disease Awareness Month. Huntington's is an inherited, fatal, neurodegenerative disease causing irreversible decline in mood, memory and movement. There is no cure. 

Huntington's Disease Society of America

Bev Hartig Huntington's Disease Foundation  

The O'Connor Family Fund which supports patients at Summerfield 

Follow IndyStar sports reporter Dana Benbow on Twitter: @DanaBenbow. Reach her via email: dbenbow@indystar.com.

This article originally appeared on Indianapolis Star: Bride and groom, both fighting fatal Huntington's disease, are married